NO WEAKENESSES

Hi my name is Merrideth House you guessed my parents love those shows somtimes I feel that is all knowledge in the medically. I live in Utah and I am 23 and a half years old and my disibility is Nemaline Myopathy. Basically at few days old they noticed something was up and then diagnose this as nemaline myopthy. It took them a little more time to confirm that it was Nemaline myopathy. And they also did muscle biopsy on both of my parents to check on if this was genetic or not.

Nemaline Myopathy is a disability of which weakens muscles in the whole body which has required me with it often comes scholiosis and and droppy chin. One of my first memories associated with Nemaline myothpy is get feeding tube at only one years old because I wasn't able to suck so my parents had to drip feed milk into my mouth instead and even then I was so skinny and it was such a struggle to get me enough nutrition, that by one years old my parents were begging the Drs to give me a feeding tube so that I could gain.

This effects my everyday life by well.... I had to get a trach (tracheotomy) when I was five because I had pneumonia. I was coughing a lot the day before and then that day I slept the whole day and my face was pale and I couldn't wake up. I was past exhausted! My mother told my father to take me to the ER and my father thought we were going to be in the waiting room for awhile because of it being not that serious but, that was not the case. They took my vitals and my pulse was in the 80s very bad and so they rushed me in and probably gave me; nebulizer treatment, I'm guessing I don't remember. But they realized that my right lung was collapsed because of so much mucus in it and basically that's when I started to need a tracheonomy and or a biopsy which is a machine that breathes the air in through the mouth and nose, but I couldn't tolerate the bipap so I got a trach and the ventilator and constant nebulizer treatments because of weak lung muscles not being able to cough it up and it took me more energy to even breathe by myself....

This effects me medically and emotionally on a daily basis because I'm in a wheelchair because I had back surgery when I was eight, to put a rod in my back to stop my spine from curving. I was walking up until then but with poor balance and I needed a helmet and walker in case I fell which was a lot oh and also a few times when I fell I broke my legs because my bones break easily... So of course after the surgery I lost whatever ability I had to walk and I became even more dependent on people which is kinda hard even tho I'm used to it because I like to do things for myself and don't like to be watched by nurses 24/7 and I can't even be by myself because it's not allowed... So ya there are many times when I just wish I could get up and run. Also because I love helping people, it makes me happy and is who I am so the fact that I need so much help from people? It's kinda annoying. Maybe even more than annoying at times..... not really any treatment plan. I have been hospitalized Ya many times for different surgeries and pneumonia and mucus plug once 

My days are different makes me different than all my friends because my brain is normal but my body is not so I just wish I can get married and do a lot of what my friends are doing and it makes me feel stuck many times. I'm a strong person by still, depression has partly affected me because of feeling stuck so many times. And the other part of depression is from family drama having nothing to do with me being handicapped. My friends are my WORLD. Samantha Kamenetsky is my person and basically what keeps me going. We help each other realize our disabilities may make our lives harder but we are still awesome,fun,crazy and strong!