LJ Idol Week One: I struggle but I am alive and that is pretty great
There are many things I could talk about with this topic, but the loudest, biggest, in my face struggle of my life is dealing with a genetic chronic illness that each year becomes more and more debilitating.For a very long time it was just a soft whisper that I could just ignore and pass off as being too dramatic or too sensitive or maybe just over doing it too much too often. Then when I became a parent it became a little louder but I still fought against it, ignoring it, calling it lack of sleep, just part of being a parent to young children.
It became louder still after I had a hysterectomy, but I still passed it off as things that it truly was not, continuing to struggle against it, throwing darts at a dart board trying to figure out what it was but continuing to mostly ignore it. Between doctor shrugs, and normal blood work and multiple specialists telling me to just lose some weight, you have RA they would say, you're too fat and not moving enough, eat less, suck it up, go on a diet, move more eventually you'll feel better. The more I followed their orders the more I struggled and the worst it became. I stopped bothering with doctors and I put it all on the back burner it. Not only was it starting to feel hopeless it all needed to wait. My older child started having several medical problems and that was far far more important. My kid came first and their suffering and struggle needed to be figured out before anything else. It was a constant fight with their doctor to try and get to the bottom of several issues. But like me it they poo pooed, and I was told several times I was over reacting and needed to calm down. I was not about to let what happened to me happen to my kid. I put up a fight.
I finally got fed up with her team of doctors so I switched Kiddo's primary. Her new primary is just amazing. She was angry that there was a lot of tests done, but no follow up. And asked up to pick something to start with and get to the bottom of first. And when I tell this story to other people I meet, I always say it started with a migraine. Me and kiddo had both decided that the migraines were the worst and needed to be gotten to the bottom of first. Kiddo was having them several times a week and it was life interrupting for them.
This is when this underlying genetic condition got a hold of a microphone and got loud and in my face but not in a way I would of ever saw coming. Kiddo's migraines ended up being irrelevant and most likely stress induced (which was caused by a super stressful school environment but is a story for another day) but it had been the in we needed to see a neurologist. Who could give a crap less about the migraines. When she was doing her original over all examine on Kiddo she started asking a million questions and started to do all these reflex tests on my child. Which as I was answering these questions as quickly as possible, all I could think was wtf does this shit have to do with migraines. Turns out absolutely nothing, but that doctor saw something that tons of other doctors had over looked.
Before I knew it we were lined up to see tons of different specialists, tons of different tests that needed to be done, and lots and lots of blood work. Which kiddo basically terrified of anything with a pointy end, that in of itself is always a struggle and usually takes several nurses and all the bribes in the world. In less than six months my child had an actual diagnosis of a genetic condition called Ehlers Danlos Syndrome and her neurologist strongly urged me to try and seek a diagnosis of my own.
Which after a bit of an internal struggle not knowing if I really wanted to go through all that heart break of finding a specialist and getting them to actually believe me about all these daily struggles I had. Less than three months after my child had a diagnosis of this genetic condition so did I. I lucked out this time around and my PCP got me in with two really great specialists who listened to my struggles. Which was my bodies cue to start falling apart even more. In less than a year I've gone from using a cane for balance, to two forearm crutches, to occasional use of a little cheapie wheel chair for long store trips, to now being fitted for an all the time wheelchair this December. Which to be honest the doctor offered it to me last year but back then I still felt like walking was something I needed to fight for. I struggled against this idea of using a wheelchair, thinking only people who can't walk at all uses them full time.
But the more I struggle to walk the more I realize I could do so much more and live a much more fuller life using a wheelchair. Which is why I said okay sure write the script at my last appointment. I really want to start to enjoy doing stuff again and going to all the places. Though the way it was explained to me I won't be getting my chair till probably like April.
But there is a happy ending to this story, while I may continue to struggle all of my life its an amazing fun journey of a life that I have met many amazing people with this same genetic condition. And the even better part is my child has responded very well to Physical Therapy, their medicine is working and they will very likely have a mostly normal teen and adult life. Sure this may change but that's just life and it is still great regardless.
It became louder still after I had a hysterectomy, but I still passed it off as things that it truly was not, continuing to struggle against it, throwing darts at a dart board trying to figure out what it was but continuing to mostly ignore it. Between doctor shrugs, and normal blood work and multiple specialists telling me to just lose some weight, you have RA they would say, you're too fat and not moving enough, eat less, suck it up, go on a diet, move more eventually you'll feel better. The more I followed their orders the more I struggled and the worst it became. I stopped bothering with doctors and I put it all on the back burner it. Not only was it starting to feel hopeless it all needed to wait. My older child started having several medical problems and that was far far more important. My kid came first and their suffering and struggle needed to be figured out before anything else. It was a constant fight with their doctor to try and get to the bottom of several issues. But like me it they poo pooed, and I was told several times I was over reacting and needed to calm down. I was not about to let what happened to me happen to my kid. I put up a fight.
I finally got fed up with her team of doctors so I switched Kiddo's primary. Her new primary is just amazing. She was angry that there was a lot of tests done, but no follow up. And asked up to pick something to start with and get to the bottom of first. And when I tell this story to other people I meet, I always say it started with a migraine. Me and kiddo had both decided that the migraines were the worst and needed to be gotten to the bottom of first. Kiddo was having them several times a week and it was life interrupting for them.
This is when this underlying genetic condition got a hold of a microphone and got loud and in my face but not in a way I would of ever saw coming. Kiddo's migraines ended up being irrelevant and most likely stress induced (which was caused by a super stressful school environment but is a story for another day) but it had been the in we needed to see a neurologist. Who could give a crap less about the migraines. When she was doing her original over all examine on Kiddo she started asking a million questions and started to do all these reflex tests on my child. Which as I was answering these questions as quickly as possible, all I could think was wtf does this shit have to do with migraines. Turns out absolutely nothing, but that doctor saw something that tons of other doctors had over looked.
Before I knew it we were lined up to see tons of different specialists, tons of different tests that needed to be done, and lots and lots of blood work. Which kiddo basically terrified of anything with a pointy end, that in of itself is always a struggle and usually takes several nurses and all the bribes in the world. In less than six months my child had an actual diagnosis of a genetic condition called Ehlers Danlos Syndrome and her neurologist strongly urged me to try and seek a diagnosis of my own.
Which after a bit of an internal struggle not knowing if I really wanted to go through all that heart break of finding a specialist and getting them to actually believe me about all these daily struggles I had. Less than three months after my child had a diagnosis of this genetic condition so did I. I lucked out this time around and my PCP got me in with two really great specialists who listened to my struggles. Which was my bodies cue to start falling apart even more. In less than a year I've gone from using a cane for balance, to two forearm crutches, to occasional use of a little cheapie wheel chair for long store trips, to now being fitted for an all the time wheelchair this December. Which to be honest the doctor offered it to me last year but back then I still felt like walking was something I needed to fight for. I struggled against this idea of using a wheelchair, thinking only people who can't walk at all uses them full time.
But the more I struggle to walk the more I realize I could do so much more and live a much more fuller life using a wheelchair. Which is why I said okay sure write the script at my last appointment. I really want to start to enjoy doing stuff again and going to all the places. Though the way it was explained to me I won't be getting my chair till probably like April.
But there is a happy ending to this story, while I may continue to struggle all of my life its an amazing fun journey of a life that I have met many amazing people with this same genetic condition. And the even better part is my child has responded very well to Physical Therapy, their medicine is working and they will very likely have a mostly normal teen and adult life. Sure this may change but that's just life and it is still great regardless.