Empowered by Illness

  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...