Carmen Hartgerink

@carmen-hartgerink | contributor
The above won’t work for me, but I have short Bowel syndrome

The Importance of Being in a Community of People Who Have Your Illness

Community: A feeling of fellowship with others, as a result of sharing common attitudes, interests, and goals. Before leaving the hospital back in April 2015 with my new diagnosis, I made sure to get connected with a fellow patient that also had the same condition as me. I had asked my nurse to connect me with someone else who was also on total parenteral nutrition (TPN) and who has short bowel syndrome. I needed to know that I wasn’t leaving the hospital completely alone in this. It took months of trying to connect, but we finally met and it was so good to know that someone else understood how I felt. There’s no feeling like sitting across the table from someone and finally be able to ask the questions that have been burning up inside you. To be able to vent your frustrations and have some say “me too.” The reason I’m writing about community today is because after being on TPN and having short gut for over three years now, I finally managed to start a TPN support group. And man, did it ever feel good to sit a room with others who get it! I have family and friends around me who do their best to understand. But if you’ve never had a severe chronic illness, have never had to rely on a feeding tube to sustain you, and never had to go through life threatening surgeries – then no matter how much you try, you just will never understand what we really go through. And that’s OK. If that’s you, then read on so you can help encourage those in your life who are ill to find their community. You can still be a huge part in our stories! No matter what walk of life you’re going through, community is important and what your community looks like will constantly be changing. And that’s not a bad thing, which is something I’ve really had to learn over the last few years. When you’re in school, you tend to hang out with kids that have the same interest as you. In university, others that are in your classes, your residence or your social clubs. And then usually we find our lifelong friends as we’re adults and working. When I had to stop working, I lost a huge community of mine and was lost for a long time. I’ve now found myself new communities. Building into one on one relationships and realizing not all groups have to be large. Spending a lot of time with other mom friends and helping my daughter also start building her own communities. But here it is, I am now building myself a new community with others – who, when I tell them I’m not feeling well, they actually get it. When I tell them I’m exhausted today, they understand the fatigue I’m talking about. When I tell them that my vitamin D levels are up and my TPN infusions have gone down by one day a week, they celebrate huge with me because they get it! Again, I know that I can celebrate and cry with my family and friends who do not have chronic illnesses, but there’s something to be said when you have someone’s ear that can actually empathize. Who have had similar disparages and celebrations. Sitting in a room for an hour and a half with fellow TPNers and being able to discuss different products, diets, and frustrations, being able to talk about our medical teams, and understanding that none of us could stay too long because of our energy levels. There’s just something to be said about having that unspoken understanding that comes almost right away versus after three years of relationships and still having to explain how I struggle on an everyday basis. So here’s my challenge to you: Find yourself a community, and if you can’t find one, start one! No matter how rare your situation may be, you’re not alone. Even if your disease is incredible rare, there’s at least someone out there that can empathize with your circumstances. Find them! That’s the joy of the internet. I have come to be a part of a few Facebook support groups and I started my own for those on TPN in my city and now we’ll be meeting every two months! Who knows what it’ll grow to be. But someone had to start it, and I’m so glad that I’m the one who did it. It won’t happen overnight, but I can promise you that someone else also needs that support group and eventually you guys will find each other. Find your community. So now after over three years of being sick, I don’t feel alone. I know I’m not alone. Now I have my little TPN and short gut family. Getty Image by Rawpixel

A Glimpse of Parenting With a Chronic Illness

Parenting is hard. In fact, I’d go ahead and say it’s one of the toughest jobs out there. You don’t get much of a break, if ever. It’s a 24/7 job, unless you work outside the home, and then you get to leave for a few hours to do another job, and then have to come back and continue being Mom or Dad, or sometimes both. Your kids are your bosses, you can’t reason with them most of the time, they dictate everything you do, and you don’t get paid. The lives of these tiny people are completely in your hands, and not only do they drive you absolutely up the walls, you have never loved someone to this extent and to this degree in your life. A love so strong it can hurt. Let’s not forget that everyone out there, including those without children, are self-proclaimed parenting experts. Doesn’t matter what you do, you’re being judged on your parenting. Co-sleeping, breast feeding, screen time, crying it out — whatever it may be, it’s controversial and someone has an opinion about it. Having a chronic illness is also a full-time job. You’re constantly exhausted, in pain, your schedule is dictated by your bathroom breaks/medication schedule/sleep patterns (or lack thereof)/appointments. It is a harsh reality for a few of us. And to top it all off, 99 percent of the people around you don’t get how truly hard it is to be chronically ill. Now let’s mash these two things together — being a parent and chronically ill — and see if you can imagine what it’s like. I’m currently a stay-at-home mom to my beautiful, intelligent, mischievous 3-year-old daughter. She’s stubborn as they come (yes, she gets that from me) and she tests my patience every day. I didn’t choose to be a stay-at-home mom, not that I don’t love being at home with her, but the turn of my health back in 2015 is what dictated that I can no longer work outside of the house. I am to be at home, all day, with my daughter and my ailments. Let’s see if I can give you a glimpse into what it’s like to be a chronically ill, stay-at-home mom: I have almost no energy. Standing for more than 10 minutes at a time takes a lot out of me. When I go out with my daughter to any sort of activity, I have to make sure I have nothing else planned for the day. It takes absolutely everything out of me. I don’t have energy for all these play groups. Most of them are during her quiet time, which I desperately need, so I end up not going to them. I need to be sure that any activity I take her to, there’s seating for me, as I can’t stand for long. Any sort of exertion and I’m done for the day. These are things I have to plan for and think about, whereas it might not even cross the mind of any healthy parent. I’m not the most patient person to begin with. I’m a lot more patient than I used to be. I think part of that is I’m married to the most patient man in the world, and with having health issues and having to deal with doctors’ offices and insurance companies, you kind of have to learn to be more patient. The thing is though, it’s really hard to remain easy-going when you’re in pain and so beyond exhausted, and you have this little person who brings all the challenges of raising a child. I hate that I get so unbelievable cranky during challenging moments (like when she refuses to listen and obey). I beat myself up constantly because of that. I don’t want my daughter to think of me as a curmudgeon, although really, that is what I feel I’ve become. The other thing I have really struggled with is the judgement that people have on parenting types. I realize the articles people post on Facebook aren’t directed at me, but how can I not take it personally? The big school of thought going around right now is that screen time is equal to doing heroin. My daughter gets two two hour quiet times during the day and she gets access to one of our old phones. We monitor what she watches and plays, and there are only age appropriate apps on the phone, of course. Here’s the thing though, if she doesn’t get those two quiet times, it’s me that’s affected. And it’s not just an, “I need my alone time” reason. No, this time is absolutely necessary so that I don’t make myself sicker than I already am. I need to lay down during those times. Many parents will clean and prepare supper while their kids nap or have quiet time; I lay down and rest, otherwise I crash, and when I crash, I crash hard. So you’re telling me that because of my illness, my kid isn’t learning as much as she should and this habit is equal to a drug addiction? How do I not take offense to that? I have been extremely blessed to have people around me who have helped take care of my daughter. My mother-in-law comes once a week so I can go to appointments and lunch dates (which I have found is equally as important to my health as anything) without having to bring my daughter along. I have friends who know my health limitations and will help chase after my daughter if need be. But not everyone is as fortunate as me. And it’s hard to ask people for help, especially when they don’t realize how hard it is on you. I don’t look sick. Unless you’re in my extremely close circle of family and friends, you don’t know how truly sick I am because I won’t let you see it (I look nasty on my bad days!) Here’s what I really want to get across. If you have a chronic illness and you’re a parent, you’re not alone. Both of these things are really hard on their own, and put together, it’s by far the hardest thing out there. You can argue me on that, but unless you’re living with both, don’t even bother. And if you’re not living with both or either of these, please educate yourself. Help those around you who need it. Even just a text saying, “I’m here for you.” A visit with a coffee! An offer to babysit so they can go to appointments. A hug when you see them. Both of these lifestyles can be very isolating. Just imagine what it’s like to have both at the same time. The biggest thing you can do is be there for that person. With all this being said, I would never, ever change my status as a mom. In fact, we want to grow our family, because to me, it really is worth it. It’s hard, but man when that kid looks up at you with all the love in their eyes, you realize that all the pain and exhaustion is 100 percent worth it. I would gladly throw away the chronically ill portion of it all, but that won’t be happening, so if I have to be a mom paired up with being this sick, I’ll do it. And I’ll do it to the best of my abilities. But again, know that you are not alone! Let me say it one more time: You are not alone! Follow this journey at A Gut Feeling. We want to hear your story. Become a Mighty contributor here .

Short Bowel Syndrome: Going Through 5 Stages of Grief After Diagnosis

Everyone has heard of the five stages of grief, I’m sure of it. Whether you’ve studied it in school or have read about it in a book or magazine, you probably at least have a basic knowledge of what it is. Most, if not all, of us have thought about various losses in our lives and applied the principles of the five stages to what we’re going through. A death, the loss of a job, of a friend, or in my case, my health. I never thought of it too seriously until the last couple years when I became ill. I quickly found that you don’t go through the five stages in a linear fashion. I wish it was a simple formula so you know if it would be coming to an end soon. But it’s more like a lot of hopping back and forth, until you’ve finally reached acceptance, and even then, is the process really complete?   So here it is, how I’ve been going through the five stages of grief: denial, anger, bargaining, depression and acceptance. Denial I couldn’t tell you how many mornings I’ve woken up hoping my becoming ill was all just a horrible nightmare. One big, long, horrifying dream I will eventually wake up from. Becoming so sick (literally overnight) just happens in the movies; this couldn’t have possibly happened to me. When the grogginess of my sleep fades away and I realize I’m still tethered to my IV bag, the heaviness of what my life is like now settles back onto my shoulders, I throw off my blanket and start my day with a weariness like no other. I still have moments of denial from time to time when I think I can do something I could once do when I was healthy. Even just my schedule has to reflect my energy and health, and if I ignore that and deny the fact of how sick I actually am, I pay dearly for it and end up sick in bed for days at a time. Denial likes to hang on as long as it possibly can, to make sure you miss your old life, miss your health, miss whatever it may be for as long as humanly possible. Anger Ooooo! This one was – who am I kidding, is – a tough one for me. I don’t even know how to start expressing to you how angry and devastated I was that I got so sick. I was angry at myself, at the doctors, at the hospital, at the situation, at God, at probably anything and everything that could have possibly changed the outcome of how I came to be so, so very sick. I was mad I woke up so ill. I was mad I couldn’t have any more babies. I was mad I couldn’t work anymore. I was mad I’m suddenly so dependent on others. The anger and bitterness that seethed out of me the first few months was awful. I don’t know how many times I literally fell to my knees, so angry that I was crying, yelling and cursing up at God. I have used some ungodly, not so ladylike language in my ranting to God in the past couple years, and you know what? That’s alright. I learned that God can take it. I believe He would rather you let it all out and tell Him how you’re feeling. He knows your heart anyway – might as well just vocalize it. Do you know how cathartic it is to yell at someone? Some of you may think I’m absolutely ridiculous for yelling at my God, but I believe it’s better than keeping it in and it’s way better than yelling at someone else in your life. If I yelled like that at my husband, well, I don’t think he’d appreciate it so much! Bargaining To be honest with you, I didn’t spend too much time on this one. I think because I’ve always been a realistic person, I’ve never seen myself as either optimistic or pessimistic. I’ve just always realized what is, is. There’s really not much to be done. No point in regrets. Let’s learn from the past and move on. So, who would I be able to bargain with? Sure, I pray God will miraculously heal me. “Heal me and I’ll do literally whatever You want me to do!” Maybe I should switch that around and say “I’ll surrender my life and then maybe You’ll heal me?!” But realistically I know my health and my life have changed dramatically and there’s no point in wishing and hoping and wondering what could be. This is it, it’s in my own hands now and I need to push forward. I’ve always hated relying on others, so maybe that’s where that attitude comes from. Depression I struggled with depression since day one of my “new” life. This is about as vulnerable as things get with me, but when I woke up from being sedated and was told my small intestine had been removed and my quality of life would be “severely diminished” from now on (actual words from the doctor with a horrible bedside manner), I wanted to die. That was it. I was in so much pain both physically and emotionally. I was absolutely devastated. And the challenge set before me was too hard. I didn’t want to deal with it. Although I would never call myself suicidal, I would have been perfectly OK if something had happened the next day and I would’ve died. This is the attitude I held for the first 18 months of being sick. I know I’m not the only one who has felt this way. I’ve spoken to many people who would describe their depression in the exact same way as that: “I don’t want to kill myself, but I’d be OK if I were to die tomorrow.” I finally realized I needed help. I sought out a counsellor, and after months of seeing her, I realized I also needed even more help and I went on anti-depressants. By far one of the best decisions I have ever made. There is no shame in needing help – whatever form that may take. If you are struggling with suicidal thoughts, please talk to someone. A friend, a doctor, a counsellor. There’s also the National Suicide Prevention Lifeline in Canada (1-800-273-TALK) and the National Suicide Hotline in the USA (1-800-SUICIDE). Acceptance I think I have finally come to the point where I have more or less accepted my illness. I say more or less because I still hate it. I hate my diagnosis. I hate that I’m sick. I hate that my life is governed by these circumstances. However, this has become my “new” normal. Soon enough I won’t be able to call it my new normal, and it’ll just be my normal. I know how to structure my days and weeks so I can benefit the most out of them. I know how to save energy for certain events and know I’ll need days, sometimes a couple weeks, to recover. I know the consequences of forgetting certain meds, eating certain foods and staying up that extra hour. I’m used to this now. This is my life now. —– I don’t know if I’ll ever come to 100 percent accept my circumstances. I’m sure I’ll go back and forth and go through these stages again and again, especially when it gets in the way of living life “normally.” But for now I think I’ve accepted things as best as I can and I need to be OK with that. And no matter what stage you personally may be in, that’s OK too. There’s absolutely no need to rush through the stages of grief, regardless of what you may be grieving. It takes time and it’s important to fully process the losses in our lives. Everyone grieves at a different pace and in different ways. And that’s OK. If you or someone you know needs help, visit our suicide prevention resources page. If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 o r text “START” to 741-741. Follow this journey on A Gut Feeling. We want to hear your story. Become a Mighty contributor here.

The Emptiness I Feel In My Heart and My Womb as a Result of Chronic

My husband and I had it easy with our first pregnancy. I literally got pregnant within a week of us deciding we wanted to start trying. I only had two weeks of morning sickness (which in all honesty wasn’t even that bad), and I was only in full labour for two and a half hours. My daughter started sleeping through the night at 6 weeks old. She was, and still is, a very calm baby, and we were absolutely, 100 percent head over heels in love with her. Then, when she was 3 months old, I ended up in the hospital with a herniated small bowel. They had to remove 99.9 percent of it along with a third of my large intestine. Our perfect little fairytale came crashing down. One of the first questions I asked my surgeon was, “Will I be able to have more children?” His short answer of “no” tore my heart apart. I was inconsolable. I crumbled. I could actually feel my heart shatter. My dream of having a large family was over. Every time I thought about it, I would break down in sobs all over again. A month later, I figured I was doing better than they expected, and maybe, just maybe, his answer would have changed. Again, my surgeon’s answer was “no.” This time he elaborated a bit more. I still have all my reproductive organs, however, my doctors don’t know how I would do being pregnant while on IV nutrition (TPN). There are some who have been able to get pregnant while on TPN, but I have so little bowel left they don’t know if they’ll be able to keep up with my nutrition and hydration. Short answer, they don’t know if I or the baby would survive the pregnancy.   Sitting here writing this, my heart still aches. Every show I watch where a woman is pregnant and giving birth, I cry. Every time someone tells me they’re pregnant, I’m instantly envious. Every time I see a baby, my arms and heart feel empty. Every time I see a pregnant woman — that beautiful glow on her face and smile from ear to ear as she feels her baby moving — my soul is in anguish. Every time someone asks me if more children are in the cards, I try not to be angry with them for their ignorance in asking such a private question. Did you know how painful that question can be for so many women? How do you tell someone you barely know something so personal? I am beyond blessed to have my daughter. I will never stop being grateful for having her in my life. But I loved being pregnant. I loved lying in bed and feeling her move around; seeing her little bum move from one side of my belly to the other. I love that I got to catch my own daughter, that I was the first person to ever hold her, that we have a bond that started 40 weeks earlier than anyone else got with her. I’ll never feel that again. I’ll never feel a baby’s foot in my ribs again. I won’t feel a baby move from side to side. I won’t be able to feel the hiccups. I won’t ever get to carry another baby from the beginning, but I will get the opportunity (Lord willing) to be a mom to more babies. Although I know there will be moments where it hurts to watch another woman carry my baby, we have found someone to join our family in an unconventional way. My husband and I, after months of discussing, praying and seeking guidance from those around us, have decided to grow our family of three to a family of four via surrogacy. This process is still going to be long, and let’s face it, probably not easy. But it is an adventure our family is ready to partake in. Does my heart still ache that I won’t get to carry a baby on my own? Every single day. But my heart is also so full of joy we have found someone to step in my place for 40 weeks and help our family grow. Hopefully, with time, the joy and the excitement of this new journey will completely take the place of the hurt that has been sitting there, taking up residency in my heart for the last two years. Follow this journey at A Gut Feeling We want to hear your story. Become a Mighty contributor here .

How You Can Get Sepsis When You Have a Hickman Line

Sepsis. This is a medical term that I knew nothing about, hadn’t even heard of, until I was diagnosed with it back in 2015. Sepsis is a toxic reaction, a poisoning of the blood, to an infection found in your body and can lead to death. In fact, one report by Statistics Canada found that one out of every 18 deaths in Canada in 2011 was due to sepsis. Last summer, if you know me or follow me on Facebook, you would know that I ended up back in the hospital twice due to an infection in my central line – that was sepsis. The bacteria started in my Hickman line, which my nutrition travels through and goes to my heart. Then my heart pumps my nutrition throughout my entire body through my blood. I wasn’t in the hospital just because I was unwell, but because if left too long, I could have gone into septic shock and died. The mortality rate for sepsis increases 8 percent every hour that treatment is delayed, according to Sepsis Alliance. Sepsis is that serious. I had decided to write about sepsis after one of my fellow short bowel syndrome (SBS) warriors was admitted into the hospital last week due to sepsis. Many people I know who are on TPN have had sepsis before. It’s common to those of us with central lines and unfortunately an ongoing battle that we will forever face. I have been told since my first day leaving the hospital with my line that if I have a fever that I must come into the hospital and be checked for infection. It’s not something I’m willing to play with. It’s not worth risking my life. Thankfully, every time I have been to the hospital with a fever, they’ve taken it very seriously and at least isolate me, keeping me safe from any other infectious diseases that may be in the air. Why did I choose to write on such a serious and some may say morbid topic? Because this is my reality. Sepsis is something that I, and many others with a Hickman line, fear. This is why I’m so paranoid about keeping my line clean. I can’t go in public swimming pools or in the lake for a swim. I have to keep my Hickman site covered at all times. I have a sterile area in my bedroom for where I connect to my TPN, and only a registered nurse, my husband or myself touches my line. I’m constantly using hand sanitizer. I have had to become afraid of germs to ensure that I stay healthy. Yet another part of my life that has severely changed since my diagnoses. A huge part of why I do this blog is to educate, and this is what I’m doing today. I’m wanting people to know about another part of what I struggle with, with my diagnosis. Here are the symptoms of sepsis, courtesy of Sepsis Alliance: Shivering, fever, or very cold Extreme pain or general discomfort (“worst ever”) Pale or discolored skin Sleepy, difficult to rouse, confused “I feel like I might die” Short of breath Educate yourselves. Sepsis isn’t just found in people who have central lines or have a chronic illness. It’s serious, let’s treat it that way. Follow this journey on A Gut Feeling. We want to hear your story. Become a Mighty contributor here . Thinkstock photo by sudok1

Style, Fashion and Comfortable Clothing for People in Chronic Pain

When picking out your clothes for the day, have you ever needed to stop and think about how much pain they will cause you? You might think about what shoes you should wear depending on how long your day will be or how much time you’ll be spending on your feet. But what about just your jeans? Or what coat you’ll wear? The fit of your shirt? During the winter months, this is what I need to think about every day. My skin becomes so sensitive during the cold months that even a pair of jeans becomes intolerable. I had to go and buy new clothing this winter just so I didn’t have to wear jogging pants every time I left the house. I had to decide whenever I went out whether I wanted to be cold or in pain because the weight of my winter jacket caused me too much pain. I wear only comfy clothes while I’m at home, but I like to look good when I leave the house. I don’t mean that I get incredibly fancy, but I like to wear fitted jeans, makeup and I do my hair. It got me thinking that I should do a blog post about how it is possible to be comfortable and in as little pain as possible, yet still be fashionable! Thankfully, leggings and tunics are very à la mode right now, but it’s possible for those of us that are in chronic pain to still get our unique fashion sense in without feeling like a bum all the time. So I enlisted some help from two of my spoonie sisters. Here’s Sarah! Sarah likes to say that she has “alphabetitis.” Her diagnoses include myalgic encephalomyelitis, rheumatoid arthritis and neuro-endocrine tumors, to just name a few from the extensive list of ailments she battles with. Sarah and I have known each other for a few years, and our friendship has become stronger as we are able to relate to each other. We know that we can cancel on each other at any time and the other doesn’t get upset. We get it. Sarah pushes herself as much as she can to have a fulfilling life, giving everything she has to her passion of art and food and to her husband and two beautiful girls. Seeing her face beam as she modeled these dresses was just amazing! We don’t get to feel this good all that often because we’re in constant pain, but one afternoon of feeling like a star just made it all worth it! Wonder Woman Dress by ANNIE 50 Ombrelle by CHERRY BOBIN Bicicleta Dress by RIEN NE SE PERD, TOUT SE CREE Catharine has recently been diagnosed with Ehlers-Danlos syndrome. This is a connective tissue disorder which leaves Catharine’s joints loose, causing them to dislocate often. Her muscles are also constantly tense, compensating for her joints’ slackness. Catharine has moments where even being touched is too much to bear. Every time I see Catharine, she’s got a huge smile on her face. Although I know that she has some unbearable days, Catharine’s joy radiates through her and it’s hard not to be infected by her attitude when she’s nearby. Joe Dress by FIG CLOTHING Daiquiri Reversible Camisole Bicycle Print by RIEN NE SE PERD, TOUT SE CREE Annabelle Dress by 3RD FLOOR STUDIOFoa Cardigan by FIG CLOTHING Abela Long Camisole T003L by MOOVMENTSakura by RAMONALISA And then there’s me! I have had short bowel syndrome for nearly two years. I have a central line going into my chest that my IV nutrition gets pumped through five nights a week. Now you may ask, how in the world do my bowels affect the sensitivity of my skin and the stiffness in my joints? I don’t actually know why, but my guess is that this is my body’s way of reacting to the trauma that it endured back in April 2015. The day after shooting these photos, I felt like I had bruises along my spine, I was waddling around the house like I was nine months pregnant and literally every inch of me hurt. Capitaine Stripe Tee by CAMELEONCerveza by RIEN NE SE PERD, TOUT SE CREE Take It Easy by ANNIE 50 Archipel by CHERRY BOBBIN Memories Dress by ANNIE 50 Babette by MOOVMENT So then why did I put myself through it? Because doing this photo shoot made me feel good about myself. I felt gorgeous! We had so many laughs. We enjoyed ourselves. For one afternoon, we could forget about our illnesses and truly enjoy ourselves. And these moments really are few and far between when you’re constantly fatigued and aching. I also wanted to show the world that it’s possible to be chronically ill and fabulous! We three ladies are proof of that. Thank you so much for the wonderful contributions of the following: Clothing: Flock BoutiquePhotography: Vintage Bow PhotographyMakeup: Make-up by Julia Sangalli Follow this journey on A Gut Feeling. We want to hear your story. Become a Mighty contributor here.

4 Reasons Not to Be Jealous of the Chronically Ill Life

Although I believe that these things are said in good nature, people often comment on being envious of different aspects of my new life, and these things, to anyone in my shoes, come off as quite ignorant. These are on the same level of frustration as platitudes for any of us living with a chronic illness. We roll our eyes at them, but really they become quite exasperating after a while. It makes me wonder what people really think I do with my day. I’m sure we’ve all seen this meme that was really popular a few years ago: I don’t actually spend my entire day flopped on the couch, eating popcorn and loving a lazy life. Here are a few of the comments I’ve received over the last couple years about what makes people covet that I live the chronically ill life and they do not. 1. “You’re so lucky that you get the perfect mix of calories and vitamins! How convenient!” I wonder if when people say this they realize why I need an IV bag with all my nutrition in it. I’m missing an entire organ. A very large one at that. I have to now spend 12 hours a night, five nights a week, attached to an IV bag. Yes, I get my vitamins and calories. No, I don’t have to worry about eating the perfect diet. But this really isn’t something to want. It baffles me that people would actually seek these out. It’s really not something to want. Eat right, stay hydrated, and for the love of all that is good and holy, be thankful you have control over your own nutrition! 2. “You’re so lucky that you don’t gain weight!” I miss working out. I miss being able to eat anything without any significant consequences. I wish I could go back to watching what I ate. You’re right, I don’t gain weight from eating. But the issues I have from eating literally anything and everything are quite brutal. If I don’t want to have those consequences (and I’m hoping that you’re all smart enough to figure out what the consequences of eating food without a small intestine does to your… uh… visits to the lavatory) I have to go without eating anything. Those are my two choices. Chronic diarrhea (there I said it!) or not eating… What would you choose? You may say it’s an easy decision until you’re faced with it in real life. 3. “I wish I could Netflix and Chill all day and not go to work.” OK, I’ll admit, before I was sick, I would’ve thought this was awesome as well. But it gets boring really quick. For the first 10 months of being sick, I didn’t even have the energy to read. So literally, all I could do was watch TV. My brain was fried. I miss working. I had an amazing community of colleagues where I worked and I really miss those friendships. I now take care of my daughter, which I do love doing! And if asked what I do, I now say I’m a stay-at-home mom, which I wear that title with pride. But I didn’t willingly step down from my position. This decision was forced on me. Hopefully, one day, maybe, I’ll go back to work, but as of right now it’s not even a possibility. So watching my daughter from the couch, while I read or watch Netflix, is my current job. That and being chronically ill; it really is a full-time job. Trust me. 4. “I would love to be able to sleep nine hours a night!” Yes, I sleep nine hours a night on a good night, but I literally never, ever, ever feel refreshed in the morning. Ever. And it’s also not like I sleep in — I have a 2-year-old and 2-year-olds love getting up at the crack of dawn. I go to bed early because I am so beyond exhausted after supper that I can’t keep even my eyes open. I also have a lot of nights that I don’t sleep through the night. I often have to get up to go to the bathroom, and although I’m not in the bathroom for this long, I’m usually awake for a good hour — hour and a half when I’m up. Once I’m done in the bathroom, I lay in bed and I can’t calm my brain down. I still replay what’s happened in my mind all the time, and for whatever reason, my brain likes to remind me of my illness, my stresses, and all that goes with this new life at 2 a.m. I get it — in a perfect world, not working and not gaining weight while eating whatever you want yet still not becoming malnourished all while watching Netflix sounds like a super sweet deal. But when that all comes with chronic fatigue, chronic diarrhea, being hooked up to an IV 12 hours a day, getting awful cramping, etc. etc. — it’s really not all it’s cracked up to be. Be thankful for your health, be thankful for your job, and be thankful for those calories you have to count. Because one day, all of that can just be snatched up from under you and you’ll wish you had all of it again. You envy my life? A day doesn’t go by that I don’t wish that I had yours. Follow this journey on A Gut Feeling. Photo by Pexels

Why Morning Is the Hardest Part of the Day When You're Sick

What was the most challenging part of my day? Let’s rephrase that. How about, what is the most challenging part of my everyday? One of the toughest tasks of my day would be actually getting up in the morning. Let’s be honest, the majority of us have had a hangover at some point in our life. Maybe some have only felt it once or twice, others more often. No judgment. Just a fact. I wake up every morning feeling hungover. But here’s the thing: I don’t drink. Yet I wake up every morning feeling groggy, lethargic, stiff, head hurting, and dehydrated. It’s really no fun getting the hangover without the fun stuff the night before. But alas, I know that a large part of the chronically ill community feel this way in the morning. I had nine hours of sleep last night. That’s a lot of sleep, and yet I’m still absolutely exhausted. All my energy is taken up by my body trying to function as normally as possible. In the evenings, I’m so tired that my body slowly starts to shut down, making it impossible for me to keep warm and making me need the bathroom even more often that throughout the day. Now, let me tell you a bit about fatigue. Because so often when I tell people that I’m tired someone says, “Oh, me too!” I am not trying to minimize that others are tired. You’re all working all week, raising kids, trying to meet deadlines, and trying to have a life outside of it all. I get it, I once was there, too. But fatigue is very different. The best way I can describe fatigue will unfortunately only resound to a percentage of the population: women who have been pregnant. Remember that feeling during your first trimester? The complete exhaustion? That tiredness that no matter how much you slept at night, no matter how many naps you had during the day, no matter how lazy of a day you had, you were still exhausted throughout the entire day? Nothing could satisfy that fatigue. That’s how I feel literally every day. Not just for three months. Every day. I was going to try and summarize this video that I saw a few weeks back, but instead I’ll just post it. It’s spot on as to what the differences are between fatigue and being tired. Take two minutes and give it a watch. Honestly, I’m not sure what I can do to make this easier. I do what I can when I can. I’m physically unable to do more than my body will allow. I’ve had to learn to listen or I become violently ill. It’s just a part of my day now and I’ve had to learn to deal with it. Follow this journey on A Gut Feeling. We want to hear your story. Become a Mighty contributor here . Lead photo by Thinkstock Images

Why There Shouldn't Be a Timeline on Grieving Your Life Before Illness

I’ve learned over the years that we not only grieve when somebody in our lives die, but that it’s natural to grieve any form of loss in our lives. Of course we grieve when people near and dear to us die. The world has grieved the loss of many celebrities this year. We grieve as we see the devastations happening around the world – both natural and man-made. We grieve the end of relationships and friendships. Grieving the end of a chapter in our lives, the end of a good vacation, even the end of a really good book. The question I want to ask is, is there a time limit to how long we’re allotted to grieve? Are we given just a few months and then expected to move on? Only allowed to relive the empty space that was once filled by said person, event or thing on the anniversary of its death? I’ve been grieving the loss of my health for the last year and eight months. Now, for those of you who have never had major health issues, you probably think I should have moved on by now, right? For any of you who have had your diagnosis for the entirety of your life or from a very young age, maybe you’ll give me more time, but you may also think that at a certain point I need to put on my big girl pants and get on with it. But those of you who had good health and then fell ill, losing such a huge portion of your life, you probably understand what I mean when I say I’m still grieving. I know I’ve broached this subject before, and I probably will again to be honest, but for the first time in months I finally feel like writing again. Why, you ask? Because I’m still grieving. This all still hurts. And it’s so much easier to crawl back in my hole than to try and make you all understand how it feels. For the majority of people with any sort of chronic illness or pain, winter is awful! I live in Canada and although winter solstice is right around the corner, we still only have sun for a maximum of eight hours a day at the moment. It gets very depressing when there are many days where it’s very gloomy and we don’t see the sun for days at a time. And the days when it is sunny, it’s extremely cold. Everything hurts because of the cold and the damp weather. It hurts just to wear the heavy coats and layers of clothing. If it’s bad weather I’m stuck in the house. Even on nice days, taking my daughter out takes an exorbitant amount of energy just to get us both bundled up to go outside. I’m reminded on a daily basis of what I once had. The holidays make it well known to me that I am still very sick. I spend the rest of my day exhausted and in pain if I decide to take a couple hours to bake or go do my Christmas shopping. I have had to turn down parties knowing I need to save my energy for other events. I’m not even able to go see my family this year because the travel will cost me too much for the short amount of time I’d be able to spend with them. I think all of this still part of the grieving process. It’s hard to shake the sadness off. I’m forcing myself to get out of the house, to shower, to get dressed. All things people who grieve struggle with on a daily basis. I literally can’t go a single day without being reminded of what I’ve lost. Some days are easier than others. Will I ever have a day that I don’t feel sadness? Jealousy of others living without an illness? Anger that this all happened to me? No clue. But I know that I’m not giving up. I will trudge through this. And I will take all the time I need. I refuse to put a timeline on my grieving. Follow this journey on A Gut Feeling. Lead photo by Thinkstock Images

Kintsukoroi: Finding Beauty After Having My Small Intestine Removed

In Japan, there’s a term called “Kintsukoroi.” It refers to broken objects which are repaired with gold. This way, the flaw is seen as a unique attribute to its history and adds to its beauty. Shortly after my first surgery, when my small intestine was removed and I was told I would never eat or drink again, I was in ICU and my mom was there visiting. I was obviously processing this grim news and spent most of my waking hours in tears. I was broken in every sense of the word. My mom took me in her arms, as much as she could being that I was attached to multiple IVs and oxygen, and with her head next to mine she whispered to me that she would take me broken over not having me at all. Although these words comfort me on a daily basis, it still hurts my heart. I’m broken. I have pieces missing. And no matter how far I may come with medications or surgeries, I will forever have the scars that remind me I am and forever will be broken. But really, who isn’t broken in one way or another? I love the idea, however, that maybe this brokenness can make me more beautiful. That gold can be added to these cracks and scars. Who doesn’t like to add a little bling to their life? OK, physically I’m not a fan of the scars left on my body. But I have noticed how my being broken has changed me in other ways. I don’t get offended easily – it’s not worth the energy it uses up. I make sure to spend some quality time with friends and family, and I get family photos any chance I can. I’m more patient now. I’ve learned sympathy is a great asset to have. I’m slowly outlining my scars with gold. Making my brokenness beautiful with things I may not have had in my life if my life didn’t take this turn. I woke up from a dream last week full on sobbing, and I whispered, “Jesus, I’m too broken. I need you to carry me.” I don’t remember what the dream was, but I’ve been hanging on to those words all week. “I’m too broken. Carry me.” I’ll never get through this on my own strength. I’ve had to rely on family, friends and my church. Now I really need to let Jesus carry me for the time being and let more gold fill in the broken parts of me. Follow this journey on A Gut Feeling. We want to hear your story. Become a Mighty contributor here . Image by Jolygon