Month: August 2016

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

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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.

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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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