And they call it puppy love…..

There's not many positive things about having Crohn's Disease. In the past I wrote a blog to lighten the mood about the very few perks I could find about having a disease. Well, within the last year I found the BIGGEST perk to having Crohn's; a disease that luckily falls under the Americans with Disabilities Act. About one year ago, after my engagement ended, I found myself back to living alone. Oddly the relationships breakup didn't take much time to recover from, but living alone became challenging. I was sick off and on and missed having someone there for comfort. I was fortunate to have family nearby and I made sure that I went to visit my niece and nephew almost every day. That fulfilled a good portion of the loneliness, but it wasn't enough. I still came home to an empty apartment. I still slept in an empty bed. My mother, the wonder woman, came up with an idea that made me the happiest I had been in a very long time. You see, my mom always is on the internet looking up new research and info on Crohn's Disease. She's always looking for an alternative to medicine to better my quality of life. She's my rock. She came across a book called, Do Border Collies Dream of Sheep, by Carol Lea Benjamin and C Denise Wall. Carol suffers from Crohn's Disease and realizes that her dog is far more than just a companion. She realizes that her lovely vivacious dog can also be a service dog. It already possessed the proper qualities of one. So this got my mother thinking…what about a service dog for Carly? I was a little unsure about the idea at first. Only because I wasn't sure if I would be able to handle the work training a dog; especially from the puppy stage to adulthood. Would I be able to truly give the dog the attention it needs being a sick person? Would I be judged by other people and questioned? The answer to all of those is yes. I could handle the training and I could love the dog until the end of time. Also, I knew that I would be judged and questioned, but knew my illness stood strong in itself. No one should dare question my reasonings. My mother and I talked on the phone about it off and on for months. She realized that it couldn't just be any cute dog that could be my companion - I would always live in apartments (well, possibly until marriage); I needed one that wasn't a major barker, and I would prefer a smaller breed dog in case I had to lift them. The big deciding factor would be companionship. I really needed a people person kind of dog. We decided on a Cavalier King Charles spaniel breed. I always felt their faces and eyes made me weak in the knees, but I had no idea just how sweet of a breed they are. We read that they fit the criteria we were looking for to a "T." There were things on the check-off list that we had to consider: no puppy mills, no inbreeding, no pet stores, and no adult dogs. The Cavaliers are purebred and come with a few health risks that we had to be cautious of. This is why we weren't willing to risk having a puppy that couldn't provide its family tree and American Kennel Club certification. We were going in hardcore and it was the only way to do it right! Looking online was challenging, and a lot of places seemed sketchy. My mother would call and find out that the "breeder" wasn't even living in the same state as the dogs - sounded like a fancy puppy mill to me. We finally got lucky! Correction: I got lucky. My mom was visiting friends in San Francisco. She was telling this lady friend all about my situation and how badly I wanted a Cavalier. As luck would have it, she just happened to know a breeder down the street who bred Cavaliers about once or twice a year. She and my mom jumped in the car and took a chance by knocking on this breeders door. She happened to just have a new litter of puppies! My mom instantly found out that the mother, father, and grandfather lived with this breeder lady and her family. Right away that was a good sign. She was also a trustworthy member of the American Kennel Club and had all the proper paperwork for the puppies. My mom began texting me photos of the puppies playing, and happened to come across this female puppy who was the runt of the litter. Next she sent me a video of her playing. I instantly fell in love. I could not stop replaying the video over and over again. I was even crying just thinking about how she could be mine some day. When my mom left the breeders home, she called me instantly and asked me if I wanted her. How could I say no? I already felt this instant, intense connection to her. It just felt right and I didn't want to second guess my feelings. My mom made the deal and she became mine overnight. At the time I was living in Deerfield Beach, Florida. That's quite the commute for an eight week old puppy. I was afraid for her, but knew it had to be done. Apparently Delta Airlines ships hundreds of animals weekly on cargo aircrafts. So this was a piece of cake. The breeder was nervous because she'd never shipped a puppy before. We emailed each other constantly to get each other through it! The day I arrived to pick up Sally ( I came up with her name before I met her), I heard all the animals contained in the back crying and barking. I was SO worried that Sally had been crying the entire trip, and extremely frightened. When they brought her tiny little kennel out, she was as calm as ever. She wasn't making a peep. She was a little frightened, but took the flight like a champ. The moment I took her out, she was overjoyed to kiss and play with me. I held her tiny little body in my hand and pressed my face against hers…over and over. We took her into a grassy area and I just sat down with her, my eyes filled with tears. She was the most beautiful little creature I had ever seen. I knew that my life would change from then on…and it could only get better. Instantly I knew that she was the perfect breed. She already loved to snuggle with me. I couldn't imagine keeping her in her kennel; even though I should have for potty training. Bad mommy. I could tell that she knew I was her mama, and she never wanted to part from my side. She was amazing with my niece and nephew, and she would never hurt a fly. She's so friendly that she'll jump into anyones open car door; something to which I must work on in case somebody ever wants to take her home! She would rather be in the company of people, and never cares to have a moment alone. Most importantly, she makes me feel complete. There are days where I can't get out of bed and Sally will lie with me the entire day. She rests her head on my chest or lies her entire body in my lap. She crawls up and spreads her entire body over mine and pushes her face under my neck. Her warmth is consoling and makes me forget momentarily that I have a disease. I can see people question and judge me when she walks around with her service dog vest. I try my best to ignore them and remember that I would never cheat the system, and this is the BEST perk about having a disease. I try to remember that I deserve to have something as beloved as Sally. She's only a year old, and still has a lot of training to do to become a successful service dog. However, in this moment she is doing pretty darn well as a puppy. I've read all the laws hundreds of times to defend my case against anyone who wants to question it. She's an emotional support dog, a service dog, a companion dog, and a love bug dog. Call her what you'd like. My life with my disease would be so much more difficult without her. No one will ever take that precious feeling away from me. Even if Sally's life isn't until my end, she will have been loved and had the best darn doggy life out there! I love her so hard every day and will continue to do so. I can't emphasize to other Crohn's patients how much better you feel when you have a companion such as a dog. If you're an animal person, I wouldn't hesitate. Sometimes I think that motherhood must be a million times more intense, because I can't imagine loving something or someone else that's mine like how I love Sally. She's my baby. The next man out there better watch out. He's got a lot of competition. Ha!

Forever In Their Debt

I was hoping that by my next post I would have good news to report. I was hoping that it would be bragging on and on about the improvements I've had with my health. However, I've decided that I can't not write a post purely because things still aren't going well. It's been extremely rough, and some days seem worse than others. So much has been on my mind that I was finding it difficult to pick one topic. I think that in my conclusion it will be about being jobless, lacking independence, and never being able to pay people back for the great deeds they've done for me - but I must say that at times I know my words will go astray. I'm feeling down. I'm having daily, correction: hourly pain. I've been given another drug, with more side effects. I'm finding it almost impossible to still lose my prednisone weight; and the moment I saw "weight gain" as a new side effect, I broke down in tears. I'm wanting to give up on these daily battles. I'm finding it hard to find anything enjoyable in life these days. Day after day is more painful than before. Yet, I'm not someone who can give up easily even if I wanted to. I fear death in all honesty, and I WANT things to improve - even when life gives me lemons day to day….. I've been finding it painful to realize that my life now depends on other people. Back in January I had to leave my job because I was missing so much work. My FMLA leaves were piled high, and my income was amounting to nothing - I couldn't survive. My mother and stepfather were gracious enough to allow me to move in with them in Santa Fe, NM. I packed up my apartment in Florida and drove to New Mexico without looking back. They told me to focus on getting better, and not stress the expectations from society. It sounded calming. But why am I not feeling calm? Why is this bringing more stress upon me then ever before? It's because I feel alone. I feel like I've completely lost my independence. I can't pay for my own groceries, let alone a toothbrush. I'm grateful that my parents give me an income, and graciously give me the things I need and sometimes simply want. But I feel guilt. I will never be able to repay them. I probably will never be someone who makes millions of dollars. I'm not saying that I don't have the potential to do great things in life. That's not it at all. I just know that if my future continues down this path of chronic pain and disease, it will be nearly impossible. I don't want to be where I am at the moment, yet I can't make change happen. Change requires money in this world. Change requires planting yourself somewhere else and being able to eventually accommodate your living expenses. Hell, how can I see change in my future? It sounds so negative, right? Yes. I'm not wanting to be negative. I'm just being realistic. I can't afford Crohn's. I can't afford Fibromyalgia. I can't afford Endometriosis. I can't afford being sick. All I want is to be able to afford it all, on my own. It's so rotten how expensive my disease and medical care is. What would I do without family help? I'm close to 30, and I feel as though I've completely failed at life - the best years of my life that is. I know there's plenty of people out there who "know" someone with Crohn's who is working and doing just fine. I know that people would just tell me to suck it up and work hard like everyone else. Little do they know that I would give EVERYTHING just to work a 9-5, 6-3 - whatever hours - job again. I would give everything to walk the halls again of The Boca Raton Resort and Club - coordinating the beautiful events! All I want is to wake up and feel the energy of an every day person. I don't know if I made a mistake picking up and leaving my life in Florida? I do know that it's made me feel lost. Being sick comes with so much emotional baggage that it can be extremely overwhelming. I know there are many people out there, just like me, who feel like a child living in an adults body. I know that I will never be able to repay my family in love or money. I'm hoping that down the road I will get a break. Something's got to give, right? As for my family and their love, I will forever be in their debt.

What do you see when you see yourself.....

This may be one of the most difficult blogs I've ever written. It's an immensely sensitive subject, but one that I know other IBD patients face on a daily basis. I want to talk about body image and self esteem. Please don't read this and think that I'm fishing for compliments, or exaggerating about my emotions. I want this to come off as pure honesty. Please see my vulnerability as genuine. Once you are diagnosed with a chronic illness a lot of things change. I always felt that I was a pretty confident person. In high school I was energetic and full of so much life. Of course I had my moments of insecurities, but nothing like today. Not even close. I grew up dancing. A lot of times you'd think that your body image would be distorted because a dancer is supposed to have this perfect, ideal physique. I suppose there were times that I would look at other girls and wish I had their skinny, ballerina thighs. However, I was literally dancing five days a week, and I was in great shape. I never could see myself eating cotton balls, or throwing up in the bathroom. I was more concerned about other teenage topics - especially boys! During college it was difficult because I had gone all those years having my parents take care of me. I gained the freshman fifteen, but always tried to do something physical to stay in shape. The extra weight never bothered me too much. However, my last year in college I fell in a deep depression. I didn't know what I wanted from life, my heart was broken several times, and I didn't love myself. I gained 40 pounds quickly, and almost went into a trance about it. When I looked in the mirror I didn't see a fat person. I was too involved with being unhappy about everything else. When I left college I worked hard to regain my self-esteem. I wanted to feel worthy of life. I began exercising often and focusing on truly loving myself. All of my self. I was in the best shape of my life. When I would go for a run I felt jolts of positive energy through out my entire body. It was amazing. It was amazing that I could look in the mirror and see what I've become. October 2010 I got the news that I was diagnosed with Crohn's disease. Ok, this is something I can live with, I told myself. I can do my best to carry on with my normal life. I never imagined that so much medication would suck the life out of me. Moving from the bed to the couch, or to the car would be exhausting. I lost a lot of weight from barely being able to eat. My mother would come take care of me, and force me to eat a slice of toast, homemade chicken noodle, or at least one egg. She knew how important it was for me to put nutrients into my body. I easily could have gone weeks with nothing but sips of water. I was so weak I wondered if I could ever be myself again. Could I laugh with my family and be the "crazy" Carly everyone once knew? I was furious as to what Crohn's had done to me. Then I fell in love. When you're in love, you kind of put aside all the bad things you feel about yourself. I had someone telling me I was beautiful. It was enough for me to get by, and not completely dislike myself, just the disease. When the relationship ended I went back into my hole. I was willing to stay there and hibernate….forever. My darkness got the best of me, and I'll never know if that contributed to my flare, but I do know that it didn't help. I was again put on steroids and gained 10 pounds in two days; then an additional 2-3 shortly after that. Prednisone is a terrible drug, but during desperate times you will take anything. My face swelled up, and my stomach bloated. I couldn't fit into any of my clothes. I felt guilty, as if I had let myself go. I would get angry, then the next minute cry at what this disease has done to my soul. I didn't want to see my reflection. I would look at my shadow and think, wow, even my shadow has big thighs. It was life changing. The depression sticks, and it doesn't just fade away once you're off the drugs. It's a challenge that IBD patients deal with constantly. We never know if our pants are going to fit. We never know when the next day will be where the doctor hands over a prescription for more steroids. We never know when our bowels will give up on us, and vanish all the nutrients we need to survive, making us skin and bones. We just hope that we wake up and have enough energy to love ourselves, just for one day. It would be beautiful to look in the mirror and not see a distended, bloated stomach. It would be nice not to focus on my thinning hair from my medication. It would be nice not to feel guilty for being concerned about ones vanity. Gosh, it just would be nice to wake up and truly love the body you've been given; in its entirety. But this is the the way I will live forever….there is hope…and one day there will be a cure. *I would like to thank my fellow Crohnies: Christina and Jeremy. They've always given me the courage to move on each day. Thank you for always thinking I'm beautiful, and understanding the moments when I don't see it.

New Path

I will be 30 after the new year. I know 30 isn't old. It just feels like I will be an official adult, and officially a WOMAN. In my twenties I see myself as a young adult, but when I look in the mirror I see a teenager . I am starting to think that maybe age won't really hit me until I see those wrinkles. I also think my perception of my age stems from my insecurities. I am 29 and living back at home with my parents. I am currently unemployed, and I'm struggling every day to live with my diseases. I don't have a husband, a child, or a booming profession. I always classified those things as adulthood, and womanhood. But lately I've learned that there is no right way to walk into adulthood. Sure there's guidelines that we all follow to be perfect in society: school, hobbies, high school, SATs, college, travel, more college, husband/wife, kids, more kids, big house, nice car, and buy a family dog. But we all know that it's impossible for everyones path to go like that. My path was pretty by the book until after college. A chronic illness like IBD can definitely stop the direction of your path. It definitely did for me. Recently I've been having to deal with my new path. I know this isn't going to be the last, but the first of many. That's life. I didn't want to necessarily be sick, indigent, alone, and have to go back to living at home. It made me feel weak and embarrassed. These past few months I have been so angry at Crohn's. I'm not taking money from my parents, and mooching off their groceries because I think it's a fun, free ride. Every day I wake up and wonder when I'm going to be able to be something again. When will I be able to buy my family dinner? Better yet, the day that I can pay my medical bills without any assistance will be the best day. But right now, I'm still going to blame the disease. I'm also going to rise my fists and say it's not fair. Pity party. I'm trying hard to have a clear vision of my future and what it can be like. In my mind I will factor in Crohn's, but it will not be top on the list. I am extremely grateful to my family for their support. I think when you're experiencing a new path, the people you surround yourself with is VERY important. I can happily say that my mother, stepfather, father, brother, and three sisters (Kyara you ARE my sister), all understand my disease, and understand that I'm struggling. I don't have to give them big explanations as to why I'm not feeling well. They don't try to force me to do anything I'm not up for. It's truly amazing how families work. There's no other love like it. Then there's that amazing Crohnie friend that knows exactly what you're going through. That person can literally relate to everything. I have that special bond with my fellow Crohnie Christina Ray. She's my rock. Where I struggle, is with outside support from strangers, acquaintances, and friends. I'm not wanting any of this to come off like I dislike people or even dislike my friends. Also, saying struggle is not meant in a negative tone. I just want to express all who surround and affect me during my new path. Not everyone knows info about Crohn's Disease or Fibromyalgia. I completely understand that. I had only heard of it once while in college, and even then I still had no clue how it affected a person. So I know it's not easy for someone to have a friend recently diagnosed with this disease, and not understanding what she's going through. You can maybe pull up a Google search and scroll to Webmd.com, but even that info will just give you the Cliff's Notes. It's not going to have a breakdown of an average day for a Crohn's patient (particularly a bad one). It won't tell you that the medication used for Crohn's is a form of chemotherapy, and in some rare cases can cause lymphoma. It doesn't say that your hair can fall out or thin drastically, or that you can develop ulcers all around the anus - feels like chards of glass when you're trying to have a BM. They don't tell you that Crohn's can trigger so many other terrible things, like arthritis, or colon cancer. Sometimes patients like me, end up with 3 conditions: Endometriosis, Crohn's Disease and Fibromyalgia. Crohn's can affect a person from their mouth to their anus. People don't know about the other parts of the body being affected, not just the colon; it involves the skin, joints, eyes, spine, liver, and ulcerating skin. The list goes on. They call this the invisible disease because a person can physically look normal or "healthy." When we're at our sickest and unable to hold in food, people love to say, "oh you're so thin, you look great!" That comment would make a Crohn's patient run in the bathroom and cry. She's probably trying everything in her power to gain weight, and get nutrients into her body. We always get the comments of "well, you don't look sick." The worst is when people tell you they know someone who has irritable bowel syndrome - so not the same thing. Or they like to tell you how they know someone who has Crohn's and is PERFECTLY healthy. Well, good for them. I don't need to hear it. Whoever that person is who is telling you that, is most likely lying. Sure, maybe they are having a good run, but they still have those bad days, and they sure as hell remember the flares like it was yesterday. They also probably didn't want to get into a Crohn's conversation with you. Also, people don't realize that when we say we're not feeling well, we MEAN we're not feeling well. Let it go and don't take it personal. I've never in my life had to cancel so much with friends, doctors, and family since I've had Crohn's. Oh, and if you see that I was out at the zoo with my niece and nephew one day, that doesn't mean I'm cured. Maybe I had a good day, or maybe I had to pop so many pills just to get out of bed. So I was walking around the zoo, thinking the animals were speaking to me. I'm not perfect, and I know other people do make an effort to understand what I'm going through. I do truly, and deeply respect my friends who try their best to understand my bumps in the road. Because hopefully they remember that the other Carly is still there. My soul hasn't died because of this disease. I may not be the fun, loud, obnoxious Carly who likes to shake her booty, at this time. But that girl will come out…..even if it's once in a blue moon, I'm still going to be that girl. So I just hope that people respect my necessities to get through this rough patch, and to voyage onto a new path. I am just done with feeling guilty for being sick. I'm also done explaining myself. If I can accomplish those two things, I think my first few steps are on the right path.

Time to deal

It's been a challenge to begin a new blog entry. Part of me feels the depression of Crohn's had taken over my life, and I couldn't imagine writing a blog that was anything but negative. Who wants to hear someone bitch and complain for paragraphs on end? During this time, I've felt that no one would want to hear it. I mean, in the past I've told myself that these entries would be an outlet for ME. I shouldn't care what other people think, and I should't feel judged. Blogging allows a lot of freedom with writing. However, sometimes the dark days take over and all I worry about is what other people think; even though there are a select few who truly understand and care what I'm going through. I just know that the fastest way to lose friends is to get sick. I don't think that people intentionally disappear from your life. I just think that it's an uncomfortable subject. Most people are used to hearing about their friends relationship problems, or family issues. But most people don't know how to handle a friend whose life consists of bad days, doctors visits, and an immense amount of physical pain. They just simply don't know what to say to them. Plus, I imagine it's difficult to see your friend in a different state. I remember when I was extremely outgoing and energetic. I always wanted to be on the go. I know that person is still somewhere inside of me, but physically it's exhausting trying to be a fraction of that person. I know eventually my medical issues will settle and allow me to be myself again. Right now it's just not happening. No matter how hard I try. If it isn't Crohn's, it's something else. Since February I have been struggling with terrible joint pain. It's been so bad that it's debilitating. After seeing several specialists, even in different states, I've been diagnosed with Fibromyalgia. Some people may think it's an illness made up in someones head. But it is truly a real disorder and it's not fun. I've been working with doctors to be sure that it's something not relative to my Crohn's. It appears that it has accumulated over time and separate from my IBD. I guess I'm just one of those people who are lucky to have both. Aside from Crohn's symptoms affecting my life, Fibromyalgia has put a huge damper on my social life. The fatigue is endless, and the aching is constant. It's just easier to stay home. But now I have to deal. I have to deal with cards I've been given, once again. I have to deal with reality and not hide out from the world. I'm starting again on this blog in hopes that it will progress as I do with my life. I want to see improvement and changes in my life. I don't want to cast it aside and hide from everyone. I know there will be bad days, and plenty of days where I whine, whine, whine! But my hope is to have more of the positive days where I've defeated the obstacles.

*(photo not taken by me. Found through Google)

The C Word

I woke up from my colonoscopy completely dazed and wondering how my rear would feel. I remember receiving the anesthesia and thinking, “I can’t believe this doctor is entering through my ass.” Little did I know that I would have years to come of several moments like that morning. When I woke up the doctor gave me the diagnosis and handed me a prescription for a thousand pills. Of course there was no discussion as to what to expect while taking these meds. Within the first few days I began noticing that I walked around with a polluted mind. I was so drugged when I had my first follow-up appointment after my colonoscopy. I had so many questions to ask about the medication and disease; however, when I arrived I blew it. I could barely focus, let alone read the list of questions I had written. The doctor and nurses found it amusing that I was so stoned. My mother came to the appointment with me, but still didn’t know much about Crohn’s either. When we left she told me that we would have to begin our own research. I would have to arrive to every appointment with a list of my concerns and demand answers. I had no idea what the plan was after Prednisone. I knew that the steroid seemed to bring down most of the inflammation, but was not a good long term drug. After my first hospital stay the doctor recommended Cimzia. The doctor gave me a brief explanation about the biologic. He was in a panic to administer my first shot. Still being on Prednisone, Bentyl, and Apriso, I agreed to anything. It wasn’t until after my first dose that my family and I began reading the details on Cimzia. The biologic was still fairly new, and the drug seemed to present a lot of hope for Crohn’s. I briefly read over the possible side effects; I agreed to take the medication. With some time I began to realize the impact these drugs would have on my life. I began joining several IBD forums to hear what others had to say. I heard all the positive and negative views on all biologics. Then I began reading comments about lymphoma, hair loss, and liver issues. Ok, so maybe doctors don’t tell you about lymphoma because it’s such a small percentage? Maybe they don’t give you the load of side effects, because they don’t want you to freak out every time you don’t feel well? It wasn’t until my first CCFA seminar that I felt the full reality of this disease. I heard about death rates, lymphoma, colon cancer, and ostomy bags. I realized that the few biologics out there have a caution list the size of Texas. I later moved on to Remicade. Man, did I ever hear horror stories about Remicade. People on the forums either loved the drug or hated it; no one was on the fence. I went along with the routine blood work, and I always crossed my fingers for positive results. Every infusion I went in thinking that it was a piece of cake. I would be tired or flu-ish for a few days, but the pay off would be worth it. Now I am experiencing my recent scare. If I had to compare it to my fistula experience, I’d say it was similar anxiety and panic. No one likes when something bad occurs for the first time and is an unknown symptom. I woke up with an enlarged lymph node in my neck. For over a month I have also been experiencing night sweats. The kind of night sweats where you HAVE to get up and change your clothes. I always feel fatigued: even though my B-12 and vitamin levels are close to normal. Certain days I have hot and cold flashes; however, some days I’m completely normal. You would think I was still taking Prednisone! It was time to call the doctor. At first Amoxicillin seemed like the fastest solution. I was convinced I had mono. After all, the symptoms matched perfectly. The blood work showed I was a carrier of Epstein Barr Virus, but that it was presently dormant. Phew! My specialist in Miami didn’t like me taking the antibiotics because it can trigger a flare. I went ahead and finished my dose and went in for an ultrasound. I felt like death. I almost cancelled the appointment, because I noticed my lymph nodes swelling had gone down. I went ahead with the appointment, because I thought it couldn’t hurt. The ultrasound tech can never tell you what she believes to see, or what she KNOWS she sees. She just kept saying, “Is this the area that it was very swollen? The doctor will probably call you back into the office, just incase.” I left the office a little disturbed. I thought everything was fine. That lady was beating around the bush like no other…just give it to me straight! So then I had the discussion with my nurse: my GI doctor and the radiologist are sending me to an oncologist. I’m sorry, don’t they deal with CANCER?! You can’t be serious? Ok, well clearly this is all a precaution because I’m taking Remicade. Oh no wait…I’m taking Remicade and Imuran. They are two lovely drugs that both can cause lymphoma – just a small percentage (as the doctors say). It’s one thing taking these drugs to help my Crohn’s; however, it’s another taking them for life and having constant scares of its side effects. It sure does feel like one thing after the other. I will have a biopsy this week, unless the oncologist really feels like it needs to be removed, according to the nurse. I am positive that the results will be negative. I just can’t help but to be nervous…just a little. I think it’s time to try those worms!!

Too bad my shit isn't invisible!

People often refer to Crohn’s Disease as the “Invisible Disease.” I couldn’t think of a more perfect nickname. Invisible refers to the internal pain that we deal with daily. People don’t see any dramatic, exterior changes like those who are in a wheelchair, or use a walker daily. I believe that I’ve learned to deal with every day pain. I can probably tolerate pain better than most, mainly because there’s not a day I live without having pain in some form. I do my best to carry on and appear “normal.” People then like to make the assumption that I must be 100% better. The infamous, “you don’t look sick!” “Look, she’s playing with her nephew. She doesn’t look that sick.” “She did her hair and makeup…she must be feeling better.” “It’s all in her head. She seems fine.” “She just needs to be very strict with her diet.” “She needs to just get off all those medications. I know someone who did it, they’re doing great!” The best is when people judge what you eat. When you mention Crohn’s they automatically assume that it’s ALL in the diet. So if they see you take a nibble of something they believe is bad, well, they assume you eat like shit every day! It’s like us Crohnies feel sick because we’re making ourselves feel that way. That’s my favorite: being judged. Invisible means that most of us can carry on with life, work a full-time job, and have a social life. However, for me that requires eminent effort. I have never been able to just jump out of bed. In fact, I can sleep until the cows come home. I will wake up and feel like I’ve never even slept. Most people my age have the energy to climb mountains and party in Vegas. That’s where I struggle. I want so badly to be an average twenty-something, single woman. Before my medication and treatments I was far more outgoing. I was in better, physical shape. Once I began Prednisone, Apriso, Cimzia, Imuran, and Remicade, my energy deflated. Slowly I started watching it decrease. At my age it has an impact on my future. I want more than anything to maintain a career. I want more than anything to have a successful relationship and someday raise children of my own. Some people think they can handle dating a person with Crohn’s, and then later see that it’s not that easy. I know for a fact that my ex-fiancé wanted a more eventful life. He was too young to realistically settle, and my disease was a lot to handle. I did my best to keep up at times. I knew that he secretly felt I would always exaggerate my symptoms. Men like to think we use Crohn’s as an excuse to get out of intimate situations. That’s far from the truth. When I experience pain, there’s nothing I want more than to take it all away. I’d rather be camping in Big Bend, or swimming in the ocean. Trust me. If anyone in the world needs to realize it’s an invisible disease, it’s your partner. The reality is that people don’t know about Crohn’s Disease. It’s not something that comes up in conversation, nor is it studied in the classroom. A lot of people don’t even feel comfortable discussing their disease. Crohn’s isn’t exactly something you can bring up for conversation at dinner. “Can you pass me the beans?” However, it’s not just the physical aspects of Crohn’s that affects our daily lives. Your friends and family may not even realize that Crohn’s causes depression. Depression can definitely be invisible. Some days you’re physically and emotionally drained from having this disease. Some days I get so angry having to deal with pain, and other days I’m just sad. Sometimes I don’t have the energy for anger. It’s easier said than done to take charge of Crohn’s and not let it rule your life. I would like to have a t-shirt for every day that explains how I’m feeling…. Monday: Dehydrated. Dizzy. Weak. Don’t talk to me! Tuesday: Body feels like it’s bathing in needles. Wednesday: Feeling ok…don’t tell me I don’t look sick! Thursday: Lunch didn’t sit well. Don’t talk about food. Friday: My gas will blow you away…literally. Saturday: I can’t party. Sunday: Sunday is not fun-day. Just sayin’…