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.