Tag: chronic illness

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

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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).

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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:

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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.

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Why Being Disabled Isn’t a Tragedy, but Having Huge Parts of Your Life Stripped Away Is

There’s been a big debate going on over social media the last couple days about the book turned movie, Me Before You by JoJo Moyes. If you don’t want to know how the story ends, you may not want to read this entry.

The premise of the story is a man who was into extreme sports, had an accident, and became a paraplegic. This woman starts to work as his support worker, they fall in love, but in the end he decides to opt for assisted suicide.

People are boycotting this movie because they think it’s showing having a disability as being tragic. I don’t think that’s what Moyes is portraying in her story at all. It’s not the being disabled that’s tragic, it’s having everything you love doing taken away that’s catastrophic.

The male lead in this story was a man’s man. Burly. Athletic. Dangerous. Now he relies on someone else to simply brush his teeth. In his eyes, his dignity has been stripped from him.

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Imagine being a singer and your vocal chords are damaged – never to sing again. An artist whose arms have been amputated – never to paint again. Or a foodie, wannabe chef home cook with ischemic bowels thought never to eat again. Enter your passion and an accident that would rob it all from you – wouldn’t that be absolutely devastating? Your passions, hobbies, even your work, everything is all of a sudden limited or taken away from you completely. When all your life you’ve been told that anything is possible, now all of a sudden so many things that are impossible.

I was originally told I would never eat or drink again due to the removal of my small intestine and a third of my large. I LOVE my food. I love cooking, eating and hosting dinner parties. I’ve dreamt of opening a restaurant, teaching my kids to cook, and of course competing on Chopped Canada (which let’s be honest, I’m nowhere good enough of a cook to ever be on that show). I loved having people over and cooking for them and with thinking I would never eat or drink again, would I really want to cook meals for other people and not be able to partake? I’m a dreamer and these were only a few of the ones on my heart. But after my first diagnosis, my dreams came crashing down.

After my diagnosis, I went to a really dark place. I was extremely depressed. A huge portion of my life was all of a sudden gone. And I was beyond devastated.

So instead of seeing this movie as making disabilities portrayed as a tragic thing, what if we see it as dealing with a situational depression? There’s so much talk about depression and how it’s a part of a disease. Would people think of this movie differently if we saw it from that perspective? That his suicide isn’t because of the disability itself but because of the loss correlated with becoming disabled.

It takes time to adjust to the new normal after an accident or a diagnosis. Some people adjust more easily than others. Some aren’t able to adjust at all. If it wasn’t for having to take care of my daughter, there’s no way I would get out of bed. She helped me get out of my depression. Not everyone is lucky enough to have someone or something to fight for. And when all you do is compare your now to your past, it’s HARD! Always thinking of the things you loved to do, that you never will get to do again.

You still don’t want to go see the movie? Fine. But don’t belittle those of us who do see becoming disabled as tragic. Again, it’s not the disability itself that breaks us; it’s our past that we loved and lost that we mourn.

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Dealing with Guilt and Fears as a Chronically Ill Mom

I love being a mom. Love it. I’ve always wanted to be a mom. I still remember watching Angels in the Outfield when I was young and saying afterwards that I wanted to be a foster or adoptive mom. Give me a whole slew of children and my life would be fulfilled.

Two weeks before I got sick, I randomly turned to my husband and asked him what his thoughts were on adoption. I told him that I’d love to have one or two more of our own, but there are so many kids in need of a home, and that I really wanted to adopt. Crazy thing is, we had no way of knowing that I was about to get sick and not be healthy enough to get pregnant again and that if we wanted to grow our family, our option would be to adopt. I really do believe that that was God’s way of preparing our hearts for what was to come.

Along with dreaming of how big our family would one day be, I also thought a lot about what type of mom I wanted to be, how we would raise our kids, and all that went with the soccer mom life. I looked forward to being the hockey mom, going to piano recitals, and being a Girl Guide leader so that I could go on weekend camping trips with my daughter(s). Call me old fashioned, but I loved the idea of having dinner on the table for my family, making lunches for them and carting my kiddos around with me in the minivan.

My life as a mom now looks significantly different. I won’t be able to do the super early hockey practices as I now barely function in the mornings. Everyone who knows me may giggle at this thinking it has to do with my severe coffee addiction (no really, can I hook it up to my Hickman??)

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I start my day slinging my TPN backpack over my shoulder, grabbing Maddie (some days with my forearms if my arthritis is flaring up), I hobble down the stairs, change her and get her to her highchair quickly before I get too woozy. I get extremely light headed and have a hard time breathing first thing in the morning, what I assume is a consequence to having my lungs filled with fluid and then drained while at the hospital. The long days of piano recitals is a dream of the past as leaving the house for more than a couple hours at a time leaves me incapacitated for at least the rest of the day. And going camping would mean not being able to find a sterile location to be able to get my TPN going.

Our daily routine at home really depends on how I feel. Hopefully we make it outside for half an hour – but never longer as it completely wipes me out. I can’t be that fun mom that plays with my daughter and chases her around. Even just helping her go down the slide a couple times takes everything out of me.

I don’t want to come off full of myself, but I know I’m a good mom. I’m not even close to perfect, but I love my daughter more than words could ever say and I do the best that I can. I’ve really had to learn how to deal with my fears and guilt surrounding being a chronically ill mom. Guilt that she won’t get all the experiences I want her to because I can’t keep up. Guilt that she’ll get more TV time that I’d like because I don’t feel well enough to entertain her myself. Guilt that she doesn’t have the mom that she would have had if I hadn’t gotten sick. Fear that I’ll fall sick again and won’t be here to see her grow up. Fear that she will one day resent me because of all of this.

You can say all the encouraging words you want after reading this, hoping to uplift my spirits. But all you chronically ill parents out there 100% understand what I’m saying and I know I’m not alone in this. There’s so much fear of being judged for our parenting choices, the amount of parent shaming out there is horrendous, but we’re all doing the best we can.

I feel like this post has been a little all over the place, very up and down emotionally. Welcome to my head space when it comes to parenting! I am my own worst critic. I am doing everything I am able to do, and sometimes more than I am capable (which I pay for for days to come). For those who are in the same boat – know you are not alone. I still struggle with my guilt and fears every day, I don’t know if they’ll ever go away, but I do know that at least I’m not the only one going through it. You do what you have to do in the moment, and as long as it’s your best, really, who cares what others think. People who aren’t in our situation will never completely understand how hard this truly is.

I pray for my daughter every day, I thank God for her, and hope she turns out okay in spite of the obstacles we will have to face together. She’s the reason I’m here.

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I hurt, God hurts

Something I’ve noticed while walking through this journey over the past few months is that certain people seem to get really unsure around someone who is going through a painful or challenging experience. An experience that someone has never gone through – something that to them is unimaginable often brings out the awkwardness and uncertainty. What does one say to someone during these times?

The majority of people are Encouragers: “Keep your chin up”, “You’re so strong – you can do this”, or “God will pull you through this”. We also have the Silver Liners: “At least it’s not cancer, a heart attack, or insert some horrible ailment that they believe is worse here”. There are the Fixers: “I know someone who went through something similar – they did this and were healed”, “This diet will fix you”, or “Exercise, exercise, exercise!” And, since I’ve always been a straight shooter this last group is my personal favourite – the Realists: “This sucks – but I’ll be here for you and hold your hand”. They allow you to cry it out, and perhaps they even cry alongside you.

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Everyone means well. I really believe they do, but sometimes it’s better to not say anything (in my opinion) than to fill the conversation with awkward niceties because you don’t really know what else to say. One thing you can do is just ask what they need from you. It’s such a simple thing, and if they’re comfortable with you, they’ll tell you.

One of the things that was said to me often that made me upset) was “God is putting you through this for a reason, He’s testing you”. Telling someone this while they are in the midst of fighting for their life is a HUGE slap in the face. HUGE! I 100% do not believe God did this to me. This isn’t to say that I don’t think God will put tests in people’s lives, but there’s a difference between going through a patch of financial difficulty to learn to rely on God and literally being on your death bed. That being said, I still struggle with wondering why God didn’t stop this all from happening. I’m sure I’ll struggle with that one for a while.

I had an old friend message me while I was in the hospital and he brought a different perspective that was beyond encouraging. He said:

I just want you to know that God loves you as much now as He ever has, and the depth of that love is unimaginable. And every time we feel pain, or weak, or frustrated, or depressed, that God sees that and it breaks His heart and He suffers alongside us.

This! This made me think of how I would react if my own girl was hurting or how my parents were feeling while I was laying there in a hospital bed. When your kid hurts, you hurt. When you hurt, God hurts. When I hurt, God hurts.

One last thing I want to share with you today – I remember one night, early on in my hospital stay when my family had gone home for the evening and I was on my own. I was feeling so alone and so scared. I don’t know if it was a dream, a vision, or whatever you want to call it, but I saw/felt God holding me. He was holding me in His arms like I would hold my baby girl. It brought me so much comfort at the time – truth be told, it still does! I knew He was there and that He was caring for me the way I needed in that moment.

When I hurt, God hurts.

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