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...

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...

The Necessity of Mental Health

Today is infusion day for my son so, on these days our anxiety is heightened. For him it's the fact that he has to be poked with a needle, has to sit for hours and can't just be a 10 year old boy. There are times when he breaks down, he pleads with me not to have to do it anymore. If it were up to me my baby would never have a needle touch his skin. The sad part is that the rewards out weigh the risk, so I have to help him to understand the necessity of his infusion and try not to cry in front of him. We've done this every 2 weeks for the last 6 months. These infusions prevent his vital organs from shutting down. Saying that out loud is breathtakingly scary. My 13 year old daughter has multiple medical issues which means we're still fighting (finding someone who will listen, necessary testing, deal with all of the insurance crap, etc.)for doctors to figure out what her medical issues stem from (she came back positive for a Mitochondrial disorder that has only affe...

Empowered by Illness

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