Empowered by Illness

  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...

  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...

 Being a parent can be hard(to say the least).    When they're young the questions come a little bit easier. Why is the grass green or the sky blue? How do I brush my teeth? How do I tie my shoes?    I know with age the questions get harder. Why does that boy like her instead of me? What kind of deodorant do I use? Why do I get pimples? Why do I get bullied? How can I make more friends?    But how many parents can say their children ask "Why do I have to suffer? Why aren't there any answers for me? Why can't I just be a "normal" kid?"   As a parent one of the hardest things to watch is your child suffer and not have any answers.    These are questions my daughter and son both ask me weekly. How do I answer these aching questions, these torturous questions? She sits in pain everyday not able to function like a 13 year old, she just wants to go to school, run track, and play tag without her body telling her "NO, YOU CAN'T!" How do I comfor...

  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...

 Our day begins when I open my eyes, the sensation of being ill already settled into my body.  My hands are tingling, my vision in my left eye is blurred to the point of not recognizing anything out of it, my shoulder feels like I crushed it in my sleep, I wait for these body parts to work correctly so I can get out of bed and start moving.  As I sit up, the weight of gravity is felt in every joint, bone and muscle, I want to lay here and not move but, I know it only makes the pain worse. I know that if I'm still for too long the pain becomes excruciating.  I pull myself up and start my day.  We have 2 dogs and 2 cats, so I love on them and tell them good morning! They talk(yes, my animals are sassy and talk back) and love on me, which makes my morning a happy one.  I wait to see if I can eat because, most of the time my stomach pains are so severe I feel as if I'm starving to the point of vomiting but, if I wait too long I'll start to get dizzy and my stom...

 I always knew I was unique....just not this "unique"! I have had medical issues since I was a small child, some of which were detrimental, others were just fun tricks. I could bend differently than others, sat in a W position almost all the time, I also absolutely loved to do back bends, showing of my "talents" to everyone. At the age of 4, I went deaf in one ear and partially deaf in the other. From there I had dislocated joints, mysterious bruises, major pains in the legs, GI issues and so much more. All of my ailments we're either chalked up as "growing pains" or just put through medical treatment without a second glance. To be fair, most medical professionals did not know to look for certain symptoms or to put them together and I have multiple genetic issues so, who could've predicted that(except Ms. Cleo, RIP).  I'm a 36 year old, mother of two, a 13 year old daughter and 10 year old son. In June of 2021, I found out that I have not one b...

 I have been through many hardships in my life and some ways I do believe it was preparing me for this newly found, unwanted life. As I fought for answers in the beginning, I also started the process of divorce from a person who was verbally and mentally abusive so, at the time I was with him my support system was toxic therefore made my fight much more difficult. A support system in this chronic life of ours is the key to succeeding in finding a diagnosis as you keep your mental health strong enough to tell the people who aren't listening(doctors, family, etc) THERE IS SOMETHING WRONG.  If I wouldn't have paid attention to my children's symptoms(my children were also told they were fine. SMH) who knows where they would be and their voices are the ones who need to be heard the most! I'm thankful that I am their biggest support because my battles became preparation for theirs.   Having a system of backing is more than just a shoulder it's also someone saying I BELIEV...

 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 f...