warrior Archives - A Gut Feeling

Category: warrior

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

35987447_10210629396405084_1482206163175997440_n

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

12
Jul
2017

An Empty Womb And An Empty Heart

categories: Grieving, Parenting, SBS, warrior

10411870_10101138501272025_5633155379555444879_n

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!

22
Apr
2016

Grieving This Last Year

categories: Chronic Illness, Grieving, warrior

A year ago today, my entire world was about to change forever and I had no clue that it was about to happen. What I thought was a terrible stomach ache was actually my rapidly body dying.

I was brought into emergency surgery after a couple visits to the emergency department. They had to cut me from breast bone to pubic bone so they could see what had happened; the surgeons had no idea what they were about to find. My small intestine had managed to twist itself and had become necrotic. From this surgery they ended up removing a large portion of my small intestine due to the fact that it had died. If they had waited much longer, I would have died along with it.

I was brought out of sedation two days later. The doctor (who desperately needs to learn bedside manner) abruptly told me that “you will never eat or drink again and your quality of life has been severely diminished”. There are no words to describe how I felt. I was beyond devastated. Anyone who knows me knows how I love food. I love cooking it, eating it, hosting people for meals. And I had just been told rather abruptly, that that part of my life was gone.

They didn’t know if I would survive either of my surgeries or my time in between them. There were several times it was very questionable. I ended up needing the second surgery as a result of the fact that I wasn’t getting any better, in fact my health was actually getting worse. During the second surgery, the surgeon discovered that my intestines had continued to die, and it was necessary for them to remove even more than they already had. At the end of it all, I was only left with 5cm of my small intestine and 36 inches of my large.

I was stuck in bed for four weeks, after which I had to relearn how to walk on my own. For every week that you are bedridden, you lose 10% of your muscle mass, so this was quite an undertaking! First time I walked post-surgery I took five steps towards the door, turned around, took five steps back to the bed and then slept for three hours. I had never been more exhausted in my life.

I had to learn about my new body. I had to learn about the consequences of having no small bowel. I had to learn that something as normal as having a drink while eating, chugging water (when you’re literally always dehydrated that is ALL you want to do) or even staying out that extra hour therefore making me overtired would cause me to be violently ill.

I had to come to terms with the fact that I would never go back to the group home work environment. That I can never travel for more than a week at a time because of the expiration dates on my IV nutrition. I’ll never be able to run again. Bike again. Swim in a lake, ocean or public pool again. I couldn’t even read up until last month because I was too fatigued to concentrate on anything longer than a magazine article. And the most painful of all, which I have asked my surgeon about on multiple occasions hoping for a different answer every time, is that I cannot get pregnant again.

I have had to grieve so many things this year, and I still am and probably will be for a long time to come. My heart is constantly aching. I wake up every morning hoping that it was all a horrible nightmare. I so look forward to the day that I can finally accept my fate.

I have had major anxiety all week leading up to today. The one year anniversary of my surgery. My own personal D-day. Today is a lot more painful than I ever thought it would be. I am going to allow myself to grieve today. To spend today in self-pity and mourn my losses.

But tomorrow — tomorrow is day one in my second year of being a chronically ill woman, and I’m going to surmount it. If nothing else, this year has made me more fierce, more passionate, more of a fighter, and more stubborn than I’ve ever been. I will own this new life. I will conquer it. This is my new life. Time to start living again.

unnamed