SBS Archives - A Gut Feeling - Carmen Hartgerink

Category: SBS

25
Jun
2018

Finding Your Community

categories: Chronic Illness, Community, Friends, SBS, TPN, warrior

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 ailment as me. I had asked my nurse to connect me with someone else who was also on TPN (IV nutrition) 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 3 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, 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 3 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 insanely 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 3 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. <3

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From left to right: Mirelle, myself (Carmen), Susan and Zach
(one person had already left before we took the picture)

12
Sep
2017

The 5 Stages of Grief After Becoming Chronically Ill

categories: Chronic Illness, Depression, Grieving, SBS

Everyone has heard of the 5 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 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 5 stages to what we’re going through. A death, the loss of a job, of a friend, and 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 5 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 5 stages of grief: denial, anger, bargaining, depression, and acceptance.

Denial

I couldn’t tell you how many mornings I’ve woken up hoping that my becoming ill was all just a horrible nightmare. One big, long, horrifying dream that 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 that 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 that I can do something that 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 that I woke up so ill. I was mad that I couldn’t have any more babies. I was mad that I couldn’t work anymore. I was mad that I’m suddenly so dependent on others. The anger and bitterness that seethed out of me the first few months were 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 lady like 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. 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 crazy for yelling at my God, but 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 to 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 that 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 that my health and my life has 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 that my small intestine had been removed and that my quality of life would be severely diminished from now on (actual words from the doctor with 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 okay 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 okay if I were to die tomorrow.”

I finally realized that 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 that 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 USA 1-800-SUICIDE.

Acceptance

I think that 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 that I can benefit the most out of them. I know how to save energy for certain events and that 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% 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 okay with that. And no matter what stage you personally may be in, that’s okay 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 okay.

12
Jul
2017

An Empty Womb And An Empty Heart

categories: Grieving, Parenting, SBS, warrior

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I have been putting off writing this post for a while now. I’ve always had it in the back of my mind to write this part of my story, but I could never actually bring myself to put my heartbreak into words. I have been very vulnerable in my writings in the past, but this, my inability to carry any more babies, this hurt too much to see it in print.

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 2.5 hours. My daughter started sleeping through the night at 6 weeks, 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, which they had to remove 99.9% of, along with a third of my large intestine. Our perfect little fairy tale 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 that 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 her 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 him move from side to side. I won’t be able to feel her 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 that 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 that 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 that 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 2 years.

If you would like to follow our journey or to help us with the financial costs of the surrogacy process, please go to our GoFundMe page to find out more information.

15
Mar
2017

Why Sepsis Should Be Taken So Seriously

categories: Chronic Illness, SBS, TPN, warrior

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 (Mayo Clinic). In fact, 1 out of every 18 deaths in Canada is due to Sepsis (Sepsis Alliance). There are more deaths due to Sepsis than Colorectal and Breast cancer COMBINED in Canada (Statistics Canada).

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, 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% EVERY HOUR that treatment is delayed (Sepsis Alliance). Sepsis is that serious.

I had decided to write about Sepsis after one of my fellow SBS warriors was admitted into the hospital last week due to Sepsis. Many people that I know that are on TPN has had Sepsis before. It’s very 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 that 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, 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 a germophobe 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:

Educate yourselves. Sepsis isn’t found just in people who have central lines or suffer from a chronic illness. It’s serious, let’s treat it that way.

07
Mar
2017

Painless Fashion – Holding On To Your Style While In Chronic Pain

categories: Chronic Illness, Community, Fashion, Friends, SBS, warrior

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 might 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, in as little pain as possible, and 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 other 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!

A maryllis Dress by RAMONALISA

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 STUDIO
F oa Cardigan by FIG CLOTHING

Abela Long Camisole T003L by MOOVMENT
S akura 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 9 months pregnant, and literally every inch of me hurt.

Capitaine Stripe Tee by CAMELEON
C erveza 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 illness 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 Boutique (Store is in Ottawa, Canada. Everything shown on this blog and more can be found on their website. Direct links are embedded in the pictures.)

Photography – Vintage Bow Photography (Ottawa, Canada)

Makeup – Make-up by Julia Sangalli (Ottawa, Canada)

I couldn’t have done it without any of you!

11
Jan
2017

How I Would Describe Myself vs How A Friend Describes Me

categories: Chronic Illness, Friends, SBS

I’ve always hated being asked this in interviews; trying to turn negative sides of myself into positive. I’m very passionate – I’m stubborn and don’t change my mind easily. I work great under pressure – I leave everything to the last minute. I work well on my way own – I hate working on group projects; please don’t make me do it! And then there’s the positive attributes that we want to get across, but still sound humble about ourselves. I have worked in this field for X number of years but still have lots to learn – I deserve a senior position because I know pretty well all there is to know on this topic. I have put together this and this and that, but I did it with the help of so and so – but really, I’m mentioning it because I’ve done most of the work and I’m wanting to take credit without being seen as a jerk. It’s such a balancing act! You’re selling yourself, trying to come off as confident in your capabilities, but not come off as arrogant. It’s an art really.

Well, this isn’t a job interview so I’m going to try and do this without putting a sugar coating on myself.

I’m going to start off with things I know I need to work on. My faults. My weaknesses. I don’t want to sit here and only describe my wonderful traits, although there are many 😉 . I realize I’m far from perfect and how else does anyone grow if we don’t see those areas in ourselves.

I’ve come to realize recently that I’m quite insecure. I think I always have been, but those insecurities went away for a while. I grew confident in the young woman I had become. And now that a lot of my titles and a lot of who I was has been stripped away due to my illness I’m having a hard time with coming to terms with who I am and how I am viewed. I realize everyone’s lives have continued on, I’ve written about that before, but it doesn’t make it any easier some days. Now keep in mind, while everyone’s lives are busy and full with work and social gatherings, I’m literally at home, all day, every day. I try to get out when I can, but even at that, it’s for a few hours, a couple days a week. So I have A LOT of time to sit and dwell and think people have forgotten about me. Which I KNOW isn’t the case, but I get in my own head, and scenarios build, and I basically sink my own ship.

That goes well into my second point, I overthink EVERY THING. I keep those to myself most times, but again, I sit and dwell. I’m a dweller. I’m working on it and to help with that I’ve changed my phone’s lock screen to this picture:

A reminder that I should never be anxious, to hand my worries over to God, and to find His peace. It’s something to meditate on and we all know I spend way too much time on my phone and so now every time I look at my phone, I’m reminded of these words. Hopefully it doesn’t just become a screen that I bypass all the time, but it will give me a moment to pause and think every time that I see it.

Now to the good things (I already dwell on too much so why dwell on my negative attributes more than necessary)!

I’m a passionate person, which yes means I’m also very stubborn, but this has helped me continue to grow and move towards bigger and better things. I throw myself into new ventures that I truly believe, I advocate hard, and I fall in love with these projects. This, as of late, has been my writing. So yes, although I may just be a blogger (and no I don’t believe JUST being a blogger is a bad thing by any means), I definitely consider myself a writer now. I have grown exponentially in my writing skills and I’m really looking forward to seeing where this takes me.

I’m a mom, and I think a darn good one at that. My patience some days is barely non-existent. I think all moms go through that, but especially on my days where I’m really hurting or not feeling well, it’s even more difficult than on my good days. But I love my daughter, I try to be patient and I see her being patient with me. I look at her and it makes me want to be a better person.

I love. I’ve always loved people. It may not always seem that way as I’m also very much an introvert, but I love people. I love hearing people tell their stories, and having people vent to me, and having people be a part of my life and me being a part of theirs. My compassion for people has made me who I am today, and although some days my heart hurts for people around me more than on other days, I wouldn’t trade that quality for anything.

I’m an open book. I have done everything I can to be vulnerable through this process. I’ve always worn my heart on my sleeve. Ask anyone in my life, if I’m having a bad day, you know it (and unfortunately may get caught in the crossfires – sorry! Blame it on the passion.). I’m sad? You can see it in my eyes. I have good news? There’s no way I’m keeping it to myself.

I am a wife, a mother, a daughter, a sister and a friend. Although my life is very different than I ever imagined it would be, who I have always been is still there. My positive characteristics are growing more than ever, as well as my negative ones peek through more often than they used to. It’s who I am though, and I will embrace it with every fiber of my being.
The rest of this post is written by one of the closest people I have in my life, Maggie Gilbertson. After reading her description of who I am, after wiping the tears away, all I wanted to do was delete my half! Maggie did an amazing job embodying who I am. I am so very grateful to have you in my life.
The best overall word to describe Carmen would be authentic. I’ve known Carmen since 2009, we met when we were doing our Social Service Worker program at Algonquin College. We became fast friends and even better we were each other’s ‘person’. This was before her gastric bypass surgery, before she met Joe, before she had Maddie and before that fateful day(s) when the incompetence of a fellow human almost killed her. In a way, we did lose Carmen that day. I think it would be impossible for her for her to stay the same person as she was before due to the devastating nature of what happened. We will all deal with life events that affect and shape us, but rarely it’s to the degree that Carmen has experienced. Trying to find peace is a very long and bumpy road and it looks almost identical as the road to success.

The reason why I’ve chosen the word authentic to start with is because in all my experiences and adventures with Carmen I’ve never once doubted that she wasn’t being real with me. She doesn’t care for drama. She will never shy away from saying something just because it may be the unpopular view or a hard truth. She is kind, but never apologetic about her interpretation and feelings. Her and I don’t always agree and that’s one thing that I love about her. We are both people with strong morals and opinions. We can have a great conversation on any topic without being scared that we’ve said something that offended the other. The Carmen I know always has something to say, in class she would often challenge someone’s comment if she thought their view on it was too narrow or they were completely wrong. She would present another angle to satisfy her conscience as well to add to the diverse opinions that our class shared. I can always rely on her to be honest. We can share our thoughts and feelings with each other without judgment and if someone else was listening it might raise an eyebrow occasionally. Life can get messy and hard sometimes. It’s not always pretty and that’s okay. You need that person in your life and we have that with each other.

Carmen is an emotional person who is exceptionally kind to others. She loves to laugh and joke around. She’s fantastically sarcastic and puts it to good use. She’s a mom who just wants to have enough energy to do everything she envisioned with her kids before she got sick. As a result from that fateful day another word to describe Carmen is chronically ill. This is something she never thought her future would hold, and neither did anyone who knew her. Carmen fights like a dog every day to not have that label define her. She is so much more than a person who is sick and I am so happy that she asked me to help her with this blog post. At the same time, I can see that Carmen is also trying to embrace her new situation as hard as that is for her. She doesn’t want this label or word to hold all the power. Where people will whisper it in hushed tones. She is taking her power back. She has the strength that most people only dream to have. Her and I share our daily successes and struggles with each other and sometimes we are just SO done with life that we need our ‘person’ to listen and say “yup this sucks”. We don’t always try to fix the problem, listening is enough some days. She has great compassion for others, and it shows through when we talk about our own struggles. Comparatively, our problems are not equally matched, but it’s not a competition. My problems are important to me and Carmen’s are important to her. I don’t need to say that she is a great friend too. That goes without saying.

Carmen has forgiveness in her heart, and always will. She has a tremendous amount of love to give others and herself. A lot of who Carmen was before she got sick is still with her and she fights to keep it that way. Most days she’s successful and the other days she’ll try again tomorrow. Sometimes there just aren’t enough spoons left. Carmen has been given a new perspective, one that no one could have anticipated, but this is her path for better or worse. She does it with grace and strength. It isn’t always easy and she is still learning how to navigate it, but the warrior inside has been unleashed. She is not a quitter and that’s one of the biggest reasons why I think she is still here today. I would be lost without her in my life(and her sarcastic comments).

07
Jan
2017

Dear Short Bowel Syndrome

categories: Chronic Illness, SBS, TPN

Dear Short Bowel Syndrome,

You are a jerk. You are literally the crappiest thing that’s happened to me. I hate having you as a part of my life and I wish I had never been introduced to you.

I knew nothing of you before, most people don’t, and most people don’t think you’re as awful as you are because your name isn’t scary sounding. Maybe as bowels you were just tired of people not thinking of you in general and that’s why you decided to act up. I’ve always known what you, my bowels, do in my body, but do we ever REALLY think about it? You digest my food, but nobody ever wonders what would happen if you were to go missing. Well now that I know, I wish I was ignorant to that fact again. Maybe nobody thinks much of you because you’re such an irritable bastard!

Well now you have my attention. I miss you more than I’ve missed anything. I would give basically anything to have you back. You feel like a long lost lover, one that I will forever yearn for. One that I will never forget. Your absence forever haunting me.

I know you’ll never come back, you’re gone forever, but know that you will never be forgotten and that I will think of you every day.

With love and despair,