A Gut Feeling - Carmen Hartgerink

17
Jan
2017

Why Fatigue Is The Most Difficult Part Of My Day

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What was the most challenging part of my day? Let’s rephrase that. How about, what IS the most challenging part of my every day?

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 9 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 3 months. EVERY DAY.

I was going to try and summarize this video that I saw a few weeks back, but insteadI’ll just post it. It’s spot on as to what the differences are between fatigue and being tired. Take 2 minutes and give it a watch.

https://themighty.com/2017/01/video-chronic-fatigue-vs-tiredness/

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 partof my day now and I’ve had to learn to deal with it.

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,

03
Jan
2017

Recovering from the Holidays

categories: Chronic Illness, Family, Holidays, Uncategorized

The holidays are tough on anyone. Even if you’re in tiptop shape, you’re tired after this crazy time. There’s so many events, a constant flow of people, and your schedule is completely turned upside down. There is no normalcy during this time of year. Imagine if you will, how much more the holidays takes its toll on someone who already gets exhausted by just surviving on an average day.

I love Christmas. Always have. And this year especially I was excited because I have a two year old and Christmas is finally becoming magical again. We started prepping her for Santa in hopes that she wouldn’t cry when she saw him (didn’t work by the way), but every morning she would find our stuffed Santa, grab him, hug him and yell out “Ho Ho Ho!” She then would ask for the tree to be turned on (or in her words OFF! OFF!) and proclaim that it was so pretty. This was our routine every morning and I looked forward to it every day (almost as much as I looked forward to my morning coffee).

Behind my excitement for Christmas was a sense of dread because I knew how exhausted I’d be at the end of it all. Our family planned quite a few events to go to and I could only hope and pray that I could make it to them all. Thankfully I actually did better than expected, not even getting sick once, but I woke up every morning with a chronically-ill, Christmas hangover (this is really the only way I’m able to describe how I felt every morning). Was it worth it? You betcha! But it still made every day hard.

It’s January 3^rd now and the events are finally over. It’s been freezing rain here all day which is just encouraging my plans for today – to do nothing! We all need a vacation after the holidays and that’s what my day is today, a little vacation. My daughter and I are having a pyjama and Paw Patrol day. She is just waking up from a beautiful two hour nap and I’m sure she’ll be ready to go back down again in a couple of hours (it’s now been a couple hours and she’s really not happy that I put her down for nap #2). Both of us are exhausted from the last couple weeks.

I guess all I’m trying to convey in this post is that although I know that certain events in my life will take literally every bit of energy out of me, it’s worth it sometimes. Most of the time actually. I’ve loved all of our extra family time. I loved watching my daughter tear open her presents. I’ve loved all the delicious food (but not the consequences of said delicious food). The traveling was hard, the late nights were even harder, and the dehydration from it all was the hardest. I’ll be recovering from all this for at least the next week, realistically probably two. Maybe even three. And even though I had my ridiculously cranky moments because I was so tired during all of it, the holidays was still a very magical time this year; something being ill thankfully hasn’t stolen from me.

I may be late in saying this but Merry Christmas, Happy Holidays and I hope you all have a wonderful 2017!

Cheers!

For the month of January, I will be doing My Mighty Month challenge. A lot of these posts will be on my Facebook page. Please click the link below to follow me there!

20
Dec
2016

Is There a Time Limit on Grief?

categories: Chronic Illness, Depression, Grieving, TPN

I’ve learnt 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 understand what I mean when I say I’m still grieving.

I know I’ve broached this subject before, 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 8 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, to take 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.

21
Oct
2016

Broken

categories: Uncategorized

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 that 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 that have been 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 that 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.

kintsukuroi

15
Oct
2016

Discovering My New Self Since My Diagnosis

categories: Chronic Illness, Community, Friends

Through every stage of life we’re trying to figure out who we are. What is our role in society, how do we fit in, who are we really? What side of us do we keep to ourselves, show to those closest to us, what do we show to the rest of the world? We are constantly evolving. Jobs change us. People change us. Age changes us. But most of these changes happen gradually enough that we adapt without any thought. What happens though when something comes along and changes everything rapidly? Everything about you needs to accommodate for your new reality.

Since becoming sick, I’ve had to stop working, my social life has changed dramatically, and my relationship with my husband has changed. I no longer work out, my energy level has changed dramatically. My months are filled with appointments instead of coffee dates. I sport an IV line on my chest which everyone stares at, have a handicap parking pass, and have a walker for my really rough days. I’ve made new friends, lost old friends, and grown closer to friends that really stuck by me through all these changes. The list goes on and on, but name something and I can pretty well guarantee that it’s changed in one form or another.

I’ve been saying it for the last year and a half, and I’m sure I will be saying it for a while yet, but I miss the old me. I miss my old life. I was full of life, joyful, positive, loud and opinionated. I loved going out and I hated staying in. If I had an afternoon free, I would either be out being social or working on one of my various projects.

I’m quiet now and much more reserved. It takes a lot of energy to be full of life. I’m not surrounded by people all the time anymore, partly because of not working at the moment and also because going out takes a lot out of me. I find it really difficult to follow conversations now, especially in the evenings when I’m really tired.

How do I go back to being who I used to be? Is it even possible? With my diagnosis and disability has come wisdom and an empathy that has helped me reach out to people. But would I give it up to be the old me again?

I’m sitting here trying to put into words who the new me is and I’m having a hell of a hard time doing that. I think I need an “Under Construction” sign to put on me for the time being. I don’t know who I am right now. I’m still trying to figure out how all of this plays into my new life.

underconstructionareasign

Yes, I am a mom, a Christian, a wife. But I’m talking about more than labels right now. I’m talking about what knits me together. What words others would use when describing me.

Ideally I’d like to eventually piece who I am back together. Some of my old self and some of my new self. The joy and thirst for adventure I had with the wisdom and vulnerability this new life has taught me. I’m still trying to figure it out, it may take time, but I want people to see the joy and the shine that used to show in my eyes.

08
Sep
2016

What I Post On Facebook vs My Reality

categories: Chronic Illness, Family, Parenting

We all know that what we see on Facebook isn’t always what exactly happens in real life. Everybody posts the good stuff. They want to show off, show the progress that’s happening in their lives, and boast the highlights of what’s happening in their life. Well, here’s the inside scoop of what my reality actually looks like vs what I like to show on Facebook.

When I’m Put Together vs My Everyday “Sick” Look

Anytime I go out in public or have people come over, I make sure I look good and 9 times out of 10, I post a selfie from that day because I feel good. I feel like garbage 99% of the time, no point in giving people a visual of what I’m actually feeling on my down days. I’ve heard “but you don’t look sick” so many times. Trust me, if you could sneak a peek at me while I’m at home alone, you wouldn’t be saying that! And there’s a reason for that – I use a lot of my energy to look good because it helps me feel good. So why use up that energy on days that I’m A. not feeling well and B. sticking around home anyway. I’ve limited the audience to a very select few who get to see me on my terrible days. It’s not how I want people to see me.

To get ready for a day out or for a visit takes an insane amount of energy. Any of you who deal with a chronic illness or pain totally feel me on this one. I can’t simply jump in and out of the shower and get ready quickly. My routine takes a long time as I really need to pace myself. Simply standing in the shower for more than 5 minutes winds me – forget the days I need to actually shave my legs! I’ve needed to put a chair in the bathroom to do my hair and makeup. I even get tired holding my arm up as I dry my hair. My outfits are carefully chosen, making sure I wear something that flatters me as my surgeries have left me with many lumps and bumps. I always need to rest whether that be just sitting down or sometimes even laying down, as this entire process exhausts me.

Some of you may say “well why waste so much energy?” I’ve come to discover, for myself anyway, that if I’m always in my pyjamas and not put together, I feel sicker. I do try to at least get dressed on days that I stay in, it doesn’t always happen, but even just putting jeans on helps to change my mindset from being ill to just really tired.

Going All Out For Projects vs How I Pay For It The Next Day

I’ve always loved projects. I love learning new skills. And although I’ve had to put many on the wayside because of my energy levels, I still need to indulge in them from time to time for my own sanity, even though I know that it’ll cost me greatly in energy.

Just the other day, I decided to try my hand at making marinara sauce. I got the recipe from an Italian, so it’s got to be the real deal, right? The amount I made came out to about 35 litres which was way more than I anticipated, but we’ll be stocked for pasta and pizza sauce for a while now. It was a delicious success! Thing is, three days later and I’m still exhausted from it. I loved making it though, even if it means I’m out for the count for the next week. I love the aftermath of a finished project – is there anything better than seeing a task be completed?

I knew that this would tire me out, but it still surprises me when I get knocked out for so long from something that in the past a good night’s sleep would’ve cured.

Going Outside With My Daughter vs The Rest Of My Day With Her

I like to share a lot of pictures of my days with my daughter. Although the plan was to go back to work once my maternity leave was up but plans changed when I was diagnosed with Ultra Short Bowel Syndrome. I am very much enjoying the extra time I’m getting to spend with her, but any of you who have spent any amount of time with a toddler knows that they never stop. Like ever. I wish I could do more with her. I wish we could spend more time outside and on the play structure. But after 20 minutes max of playing outside, I’m tapped out. I physically am unable to continue. The rest of the day is spent watching her play from the comfort of my couch.

I’ve tried play groups, but chasing after her for 2 hours is impossible. I’ve looked into swimming lessons, but I can’t go in public swimming pools as it could cause me to get an infection. We have most of our play dates here as I know the environment and I can more or less control it.

Thankfully our living room closes off from the rest of the house, so we spend our day in there. Me on the couch and my daughter playing with her toys. She is a very independent child and is perfectly content playing on her own. I really wish I could keep up with her, but it’s just not possible.

Events I Go To vs How I Prepare Leading Up To The Event

I love sharing pictures of events I get to go to. It gives the illusion that I do have a life sometimes. What you don’t see however is how exhausting the smallest event can be for me. Each incapacitating me for at least a couple days afterward.

Being chronically ill has changed pretty well everything in my life, but I still do my best to make it to events such as concerts, weddings, trips, etc. I do however have to plan ahead for them differently than I would have previously. I went to a concert back in July and literally stayed in bed until supper time so that I would have the energy to stay at the concert as long as possible. At weddings. I unfortunately don’t have the energy to dance anymore, and I miss it, but I stay as long as I can and at least try to enjoy the dinner. And my trips so far are planned around leaving the hotel mid-morning, napping for 3 hours in the afternoon, and returning by 8pm for the night. None of these are ideal, but if it means I get to enjoy these moments, then it’s what I need to do.

My Family vs My Family

I brag ALL THE TIME on Facebook about my family and it’s the same in reality. My husband is the most loving, caring and supportive man I could’ve ever asked for. Those pictures of my daughter always smiling, that’s pretty well how she always is. My family brings me so much joy and happiness. They keep me grounded and they give me hope for the future. There’s no point in showing it any differently on Facebook because they’re already pretty freakin’ great!

30
Aug
2016

4 Things I’ve Learned When I Realized I’m Not Invincible

categories: Chronic Illness, Family, Friends, Invincible

Unless you’ve faced death early in your life, most people believe themselves to be invincible, believing they won’t have to fear death until they are much, much older. The majority of people my age have only experienced death from afar – a friend of a friend, a grandparent, a long lost relative. But for the sake of this post, when I’m talking about facing death, I’m talking about a first hand experience. Having stood toe to toe with death yourself.

Usually the certainty of living until you’re closing in on your 90s is something possessed by those younger than their mid 30s. The thought that nothing will happen to them. Tragedies are only in the movies, far off lands and only found in the news. With this view of our lives, I find comes two responses. The first is that death won’t find you, and therefore you can take on the world and test your luck. You can do anything and everything and hope that the worst that’ll happen to you is a broken bone or two. The second response is that you have plenty of time to get things done. Things constantly get put off. You continue to dream, but you’ll find a better time to live those dreams out. Focus on the here and the now.

The latter form of thinking was me. I’ve always been a dreamer, but felt I had to be practical first. Things or people always got in the way. Excuses upon excuses kept building up and my dreams kept getting pushed to the backburner.

Then the unthinkable happened. A freak accident. My small intestine twisted up and became necrotic, and if it had not been caught when it had, I would have died. I was so ill going into the emergency surgery that I didn’t even realize what was happening. It was when I was going into my second surgery a week later that I had realized how serious this all was. I was laying on the surgical table, and my surgeon came to talk to me before they put me under sedation. I will never forget that moment. Looking up at him, I could see it in his eyes. The sadness, the hopelessness. I could tell just by looking at him that he thought that I wouldn’t make it out of the surgery alive. Tears rolling down my cheeks, I told him that he needed to make sure that I survived; I wasn’t ready to die.

My view on life has changed since those days, and I really want to share with you guys what realizing that I’m not invincible has taught me.

#1 – I’ve had to give up on some dreams, but I can form some new ones. We all dream. We all want big things for our life. I’ve had to give up on some big dreams: going scuba diving, running a 10k, getting pregnant again, living in Africa. Some dreams are easy to give up, and others are ridiculously hard. My heart still hurts, and may never stop hurting, that I can’t get pregnant again.

I’ve also come to realize that I need to start taking advantage of the life that I do have left. I’m crossing off things on my bucket list that I’ve put off for so long. Ok, so I may never be able to go scuba diving for fear that I’ll get an infection from the bacteria in the ocean, but I’ve had other dreams brewing for a long time. I’ve had the opportunity to cross a couple off my list already this year that honestly, I would’ve put off even longer if I hadn’t become sick. I have to plan for things differently to make sure I don’t get too sick, or plan that I do nothing for a couple days after knowing that I will be very sick. But, at least I know to plan for them. Life looks different now, but I still have to take advantage of my time here on earth.

#2 – I look at my loved ones in a very different light. I do my best to invest in the relationships that have always been there, and putting more time in relationships that I want to see grow.

I almost made my husband a widower, my daughter motherless, and my parents bury their only daughter. These are things that are always close to my heart. Not as something that devastates me, but as a reminder to really prioritize these relationships. I say sorry when I’m being a jerk, I never leave the house without saying I love you, and I get in all the hugs and kisses that I can. You really never know when the last ones will be.

#3 – I’ve learned to not fear death. I have a strong faith in God. I know that when I do die, I’m going to Heaven. But I really do think that if God saved me from dying, there’s a reason for it. I’ve come to the point where I’m not scare of dying, but more so scared of leaving people behind. I think that’s what helped me be so strong and fight for my life, the people I knew that were waiting for me.

#4 – Now I’m learning to not be afraid of living. I think this is honestly one of the hardest ones for most of us who live with a chronic illness. I said earlier how I’m working on crossing things off of my bucket list, but those events only come a few times a year. Those are the big things that you plan for. When I talk about living, I talk about the day to day life which is so hard for us to face. I guess this point has less to do with realizing that I’m not invincible, but embracing my life with chronic illness. I’ve come to realize that life is ridiculously short and I don’t want to waste it sitting at home all the time. Thing is, if I leave the house, I will pay for it later that day, the next day, and sometimes even longer. But – I keep having to remind myself it’s worth it. I sometimes literally have to force myself to go out, even if it’s just for a coffee run. I’ve made a goal for myself to make plans with friends at least once a week. I never regret making plans, even if it knocks me out for days. I can’t live the rest of my life cooped up in my house, no matter how terrible I feel.

Yeah, being faced with death sucks, for anyone, but we also have a little nugget of wisdom and insight on life that not everyone gets. Take advantage of that and LIVE.

09
Aug
2016

The Chronically Ill Cha-Cha – Two Steps Forward, One Step Back

categories: Chronic Illness, TPN

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It’s been a while since I’ve posted something, and as much as I wish that it’s because I’m having an amazing, fun-filled summer, it’s not.

With having a central line (my Hickman), as soon as I have a fever, I have to go to the emergency department – no ifs, ands or buts. So it was quite a disappointment, when on my husband’s birthday, I was running a fever for the first time since being discharged from the hospital in June, 2015. The hospital took cultures, which takes a few days before showing any signs of bacteria growing, and sent me home as with my lowered immune system I would be safer from other infections there. Three days later, I was called in and admitted for a bacterium found growing in both my Hickman and peripheral veins. After trying my best to not have my Hickman pulled, the hospital removed it and a PICC line replaced it. After all was said and done, after two nights spent in the hospital, I was sent home on IV antibiotics.

I was doing ok, showing no signs of fevers, until a few days later when I woke up ta 4am with a 39.5°C (103.1°F) fever. In the morning, we were off to the hospital once again where I would end up spending the next week away from my family. For the first five days that I was there, I kept running fevers, my white blood cell count was at 0.87 (the norm is 5-10), and I was unable to connect to my TPN (IV nutrition) for five days as the infection had spread to my PICC line and they didn’t want my TPN to go through the infected line, picking up the bacteria, and sending it to my heart (where a central line ultimately leads to).

I’m going to just go off on a side tangent for a moment here to help you understand how I was feeling after those five days. I went five days with no nutrition. Most of you know that I can eat, but I don’t actually absorb anything. And because I can’t absorb anything, there’s no point in a feeding tube either. Fevers were taking all my energy – having at least 2 or 3 a day. By day five, my muscles were hurting because they weren’t receiving the nutrients that I needed, my concentration was gone, and my body completely drained. Walking to the bathroom took energy. Staying awake for visitors would exhaust me. Everything, literally everything, became an arduous task.

They finally figured out that the bacteria growing was called Gordonia. It’s mainly found in long term TPN users, and very rarely at that. The doctors put me on a pretty potent antibiotic, and after 48 hours fever-free, I was finally sent home.

Although the fevers were gone, the antibiotics were kicking my butt, making me beyond fatigued all the time. No amount of sleep or rest cured it. Thankfully, with my husband, mom, and mother-in-law by my side, our home continued to run and myself and my daughter were well taken care of.

The day I went into the hospital for the second time, before my week long admission, was a Friday. We had plans for an amazing weekend – I had been looking forward to these plans all week. Friday we were going to take a picnic and go to a splash pad with our toddler. Saturday we’d go to the Farmer’s Market (where they have the best dumplings!) and then for locally sourced ice cream afterward. And Sunday, go to our church where we always feel an outpouring of love when we attend. I was SO looking forward to a “normal” weekend, which is far from the norm for our family, and it was ripped away from me.

I recently posted this picture on Facebook:

I posted that more so to try and encourage myself, to try and make light of the ridiculousness that has been my life these last two years, and to help myself see that this new life of mine isn’t all that bad. But unfortunately, it didn’t quite do its job.

Here’s the real reason why I haven’t written a blog post in two months. I’m angry. I’m frustrated. And I’m tired. I don’t want my blog to be a cheerless space. I want people to be able to find encouragement and hope through my words, at least some, if not most of the time. But people keep asking me how I am, and truthfully, I don’t know how to answer. I was doing ok. Getting used to my new normal. And then I got sick again. Infections and Sepsis come with this illness’s territory, I know that, but how frequent will these hospital admissions be? Will I ever come to terms with this? Every time that I start adjusting to my life as someone with a chronic illness, will another infection come along, knocking me off of the mountain I’ve so desperately been working to climb?

Hopefully my next post will bring a little more light to your day. But I needed to make known how hard these last couple months have been. Being chronically ill is hell on earth. This post isn’t to get sympathy and I definitely don’t want your pity; I just needed you all to know that just because I may look like I’m better, I’m not.