Introduction To Our Chronic Life

Hello world!

My name is Jessica and I am here to take you through a journey of rare discovery. That amazing detection of genetic disorders (note the sarcasm).... About 6 years ago I started a journey no one ever wants to start. I became extremely sick to the point of not being able to hold up my own weight, couldn't grip things, my speech and memory were affected negatively as well as immense pain I wouldn't wish on my worst enemy. That was just the beginning of the journey we now call our lives. It may have started with me but, much to my dismay it did not end with my struggles. If you haven't figured it out, this blog is all about living with chronic illness and raising children with the same problems. I will speak from my point of view on how life truly is(which if you live this life you know that is no easy feat). I will also get opinions from other people, parents, professionals and anyone else that can give a true revelation in this way of life. This is not for the faint of heart and can be hard to discuss due to the nature of the hardships people in this life of chronic illness endure. Join me in self discovery and helping others to have a true understanding of this life no one chose.

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Hiding from the World

My daughter and I had an argument yesterday, when I felt defeated I came to a realization that we tend to hide who we are when it comes to our illnesses. As she explained to me that she feels so lonely, I thought at first it is because she's 13 we go through these things, I remember feeling that way as well when I was her age but, I prodded, we argued and I had a sudden epiphany.... She feels lonely because of these illnesses..... We are limited to how much we're "allowed" to share with others for one reason or another. Sometimes it makes people uncomfortable, sometimes they look at us weirdly as if what we're saying is in a completely different language, they look at us like it's all fake, they aren't sympathetic, the list goes on and on. For me, I've learned that most people can only care as far as they can see, when it's out of mind there is no empathy or sympathy because they don't live it. This is still a daily struggle for me b...

The Complexity of Happiness

I'm going to take a break from talking about illness and just write about something simple yet so complex....... Happiness. Life is truly hard, even for individuals who do not live as we do, it truly is a struggle, day to day, week to week, sometimes even minute to minute. So in the struggles of everyday life where do you find happiness? From philosophers to small memes, people have spoken of "The elusive happiness" as if it is one of the hardest things to find. You look at social media and you see people "in their happiness" but that's not always reality. That is merely a flash of their hoping for happiness. This is something I've contemplated especially for the last few days. This year has been one of the most trying and miserable years. I think everyone feels that way, unfortunately. This year, for some odd reason, it feels harder than most. So, not only am I bringing this question to your attention I'm also bringing it to mine...

Careless With Yourself?

Caring for yourself or self care.....I think we confuse the two, unfortunately. Self care these days is promoted as bubble baths and running errands. Don't get me wrong getting a good pedicure is definitely self care but, there's so much more to careing for ones self. When we confuse self care we start to think it's all material, when in reality digging down deep to the issue of needing the self care in the first place is necessary. Maybe you had bad flares that week and couldn't get out of bed, getting meditation in while laying in bed is self care. I know when I have a bad flare I don't want to do anything but, reminding myself it's necessary to care for me even if it's just a five minute meditation, then I go back to binge watching Gilmore Girls, lol! Stop for one minute while reading this.......take a deep breath......then ask yourself what do I truly need. This is a question in our busy lives that we forget to ask oursel...

Empowered by Illness

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