I can't feel my blank when i'm with you

 Hey my name in Anna I live in San Francisco and in case your curious I have a few disabilities the may take a bit. So What do I have? Well...How much time do you have? I have more chronic illness than I can count including asthma which is A condition in which a person's airways become inflamed, narrow and swell, and produce extra mucus, which makes it difficult to breathe. Plus, hypothyroidism is,a condition in which the thyroid glands doesn't produce enough thyroid hormone.more notable ones however are   Autonomic dysfunction can affect a small part of the ANS or the entire ANS. Some symptoms that may indicate the presence of an autonomic nerve disorder include: dizziness and fainting upon standing up, or orthostatic hypotension. an inability to alter heart rate with exercise, or exercise intolerance.   Endometriosis which is wwhenA disorder in which tissue that normally lines the uterus grows outside the uter. I also have a rare condition called Reflex Sympathetic Dystrophy (RSD)which is Chronic arm or leg pain developing after injury, surgery, stroke, or heart attack. low cerebral blood flow which is hypotensive neonatal distress. Mast­Cell Activation which is mediated by the high-affinity receptor for IgE (Fc epsilon RI) is considered to be a key event in the allergic inflammatory response. So The autonomic nervous system (ANS) controls unconscious thought. This includes heart rate, blood pressure, temperature, tearing, etc. All that fun stuff we take for granted.
Endometriosis is when cells from cells (from the uterus) travel out of the uterus and basically cause patches of skin to form where they shouldn't. Some patches are different colors ranging from clear to red with clear being the most painful and red being barely felt. Red is also the most dangerous since it can often go undiagnosed and lead to infertility. I believe I have white.
RSD is the misfiring of nerves. This causes pain when there shouldn't be and intensified pain. Mast­ cells control histamine release. It's almost like have severe allergies. The body releases an overabundance of unnecessary histamines. Some of the systems include hives, severe itching that I didn't even notice until after I was diagnosed, severe discomfort, and many other symptoms that I forget about until my medicine wears off after a successful treatment day.I received the diagnosis of hypothyroidism when I was in first grade. We didn't find out about the Endometriosis until I was thirteen and was lucky they found it so early. Shortly after came the asthma diagnosis. The autonomic dysfunction came a year later with the RSD (a suspected cause is the shock to the development of my nervous system from the Endo, but we'll get to that). We only found out about the Mast­cell Activation about two months ago. I'm 19 now.Story behind it.
Oh gosh where to begin. I guess I'll try to keep it short but I'm not sure that's possible. I had had abdominal issues for years. As they got worse and we got more desperate for an answer doctors started suspecting a psychological cause more than a physiological. They even a used my mom of having munchausen's. This included a nine day hospital stay where five days were just psychological evaluations. I guess it was partially my fault since I was a) a kid and didn't know what was a normal feeling and what was not and b) because I had become so used to hiding it. I don't blame myself at all, of course I sometimes wonder what my life would have been like if the process had gone more smoothly but I am in part who I am today because of my experiences. This is one of the reasons I strongly believe doctors should be trained to be able to spot things, such as when a kid makes a face when a doctor pushes on their abdomen but doesn't say anything. At the time I was going to a very religious school that did not, what's the word, I guess believe me, even after the surgery. Even with the picture proof in front of them. This all resulted in me having to make up the seventh grade. They were the epitome of making a bad situation worse. After pain rehab and a new school I was finally on the right track.Then, one day I was walking between school buildings and I kind of just looked down at my feet. In that moment I knew something wasn't right again. I just kinda knew. I can't really explain it. It was like my legs were heavy and far away. I think I had been feeling it for months but after the trauma of one medical diagnosis I just couldn't see telling my mom I was sick again and that we had to go to more doCtors and face more scrutiny and disappointment.
After a couple more month I finally had to tell her. I remember to this day. We were in our van driving home from school I guess, and my legs were uncomfortable so I had my feet up on the dash. I don't remember if I was able to hold back my tears but I did get it out. G­d i was so uncomfortable. I told her "I think I'm sick again." She said "I know."I think my heart stopped for a second. As I mentioned earlier, I had become very good at hiding my pain. This was of course something completely different though. More discomfort than pain. Discomforts sometimes worse. They’re is things you can do for pain. Take pain medicine rub where it hurts to distract the nerves use a tens unit. For discomfort all you can do is sit through it and wait for it to pass.I got lucky. We were immediately referred to CHOP Children's Hospital of Philadelphia, and in a few hours we had a diagnosis. For a while I muddled through. Drank a lot of Powerade (120 oz a day) went on the treadmill three time a week for an hour and a half. Then I ended up back in pain rehab, had to go to physical therapy three times a week and eventually couldn't go to school during my freshman and sophomore years of high school. Right before my junior year, by right before I mean two days into, we started to get some answers. You have to understand, I never had really tested positive for anything before. We had a party when I tested positive for a strep test. At least it meant there was something we could do. So when the doctor starts giving the results and what I thought was the famous let down easy there's nothing we can do for you speech I start to zone out. Then she starts talking about how all my reading were normal blood pressure on my arm, heart rate, but the my cerebral blood flow dropped by 10%. I had to ask her to repeat herself she also said that I don't sweat over 40% of my body which is why I over heat like a computer hard drive.I only missed nine days of school that year. I bet I can still tell you exactly for what. Two were for the original appointment, three were for a marathon that I completed on my own two feet, one was for a yearly appointment, two were a cold that my teacher had to send me home and order me to stay home, and one because I threw up one day and stayed home to be safe. My senior year I was a little more lax. I don't even want to see my attendance record  only two days were actually full on ditch days. A lot was doctors appointments and tests in preparation for my gap year in Israel. At the end of the last school year, the euphoria kind of wore off and I started to feel "not right" again. "not right" is how I used to describe the low blood pressure wife it was indescribable. My mom used to get frustrated with me that I couldn't describe it. Side note: one day after the diagnosis, my mom started "why didn't you just say something wasn't ri.... Oh". It was one of those moments when your like "see I was telling you all along. We just didn't know what I was saying." Eventually, my pulmonologist (for asthma) referred me to a neurologist friend of his to try and get to the root of my discomfort. He was very helpful and I actually was just at him today for a follow up. He referred us to a specialist on mast­ cells and a connective tissue thing they think i have, after being able to draw on my arm with a paper clip. Apparently that's not supposed to cause your arm to light up like a Christmas tree. The mast cell specialist said that the specimen they sampled had so much histamine in it it couldn't be measured. She said because we didn't refrigerate it, the sample would have beeneven more saturated than they thought. She said this could be everything or it could be nothing. Well it certainly was a huge part of it. No more heavy lung feeling (at least not when I take my nebulizer on time. I know there's still a long way to go. It's been a domino effect ever since we found out about the low blood pressure. Now because of that I get to go to Israel next year! I think it is important to note something. If it had not been for the Endometriosis, I wouldn't have gotten to my pulmonologist or CHOP. Had it not been for CHOP I wouldn't have been prescribed pain medication for my RSD. Had I not have had the pain medication I would not have gotten a long term overdose. Without the long­term overdose no one would have thought I had a genetic issue that was causing my brain to not transmit the signal for me to breath (hyperventilation). Had it not been for this suspected condition I wouldn't have been referred by my pulmonologist to the specialist who agreed to see me. Had it not been for seeing this specialist I wouldn't have gotten a tilt test with an experimental blood pressure sticker on the forehead sticker that had only previously been used in the NICU. Had it not been for this special sticker, I wouldn't have found out about the low blood pressure. Had I not found out about the low blood pressure I would not have been able to recover my academic career. Had I not recovered my academic career I wouldn't have gotten into or waitlIsted to all ten colleges I applied to. Including two Ivy league grade programs and would not be going to an amazing Israel program next year. When do so many domino effect coincidences stop being coincidences. Treatment plan(what does it do for you)?
Well, every three and a half waking hours I take medication to raise my blood pressure. I don't let that stop me. I have a watch on my wrist that vibrates to remind me. Initially it was a problem because I was forgetting when to take it and if I had taken it or not.
I also take a bunch of antihistamines three times a day. In addition to that I take a medication specialised for my disorder four time a day by two different forms. One an oral one I dilute in water, and a nebulized solution. It's kind of inconvenient at times because it's every five and a half hour and I haven't started setting an alarm for it. Sometimes I sit down at a meal eat some challa and then "dang it" moment because I can't take it anymore. It must be taken on an empty stomach. It's annoying
because then I get a bloated and uncomfortable stomach.Hospitalized ever?
Yes, before the Endometriosis discovery. Never have been since that experience. It's become a problem before. When I was getting sick a lot due to a lowered immune system I got a horrible stomach flu that lasted for days. This resulted in serious dehydration. You could make a martini on my chest my heart was beating so hard. My mom got really upset a few days later when I told her.Affects everyday life?I try my best not to let and do crazy things anyway. Every once in awhile if I get too little sleep, I can't function. Literally I can feel my body trying to shut down. I try to go home from school orrest when that happens. Also, the thing that probably affects me the most is, occasionally, I get these awful, unbearable headaches. Really can't function with those. I'm usually incapacitated on the couch with a blanket and iPad for hours on end (usually until I can get to bed). Regardless, my friends at school know I have medical stuff but they've got no clue how bad. They have no idea that whenever I'm a little edgy it because I'm waiting for important test results, or that when I'm snippy it's because I'm feeling so sick that they couldn't be in school if they felt that way. If you're having trouble picturing it, it's kind of like having the flu every day. Temperature out of whack full body discomfort and, even though I'm used to feeling like this, sometime a feeling of literally wanting to crawl out of your skin it's so unbearable. No matter what I feel physically I push through. I climb the mountains and jump those hurdles I get there no matter what. Even when it requires a rerouting or detor. We all have challenged every day of our lives. Mine are just a little different. Ever felt discrimination cause of disability?
Not recently. Unless you count teenage friends who aren't really mature enough to handle it Also did it affect your self esteem and is it something you try to hide?
Doesn't affect my self esteem. I don't really try to hide it as much as not tell people I don't really think need to know.Do you struggle with it? Nah, now that we know more of what makes me feel so sick my family's pretty good with it and so am I. I don't talk to my friends about it, only my best friend. This stuff barely phases her any more and after I tell her what's bugging me we usually move on to the next topic like its a normal discussion. Then someone around us usually points out how it's not and we start laughing.One more thing, I have this awesome, crazyenthusiastic friend who had a setback earlier in the year. She's got a lot of struggles in her personal life as well. And you know what? She's friggin awesome! She's there for everyone all the time and everyone who meets her loves her! She's one of those amazing people who you look at and say “that girl, she's going places.”

I am hyper to hear your story

Hi my name is Chloe I am forty nine living in Louisiana and here is my story I was diagnosed with what I thought was a relatively mild hypoparathyroid  condition when I was  a newlywed. I felt very guilty that even before we'd been married for a year, my husband had a wife with a medical issue. After about twenty years a number of things happened: bones in my feet started breaking ; and I'd end up in the hospital with other infections. Following one hospital stay I had to quit a full time retail management position because I wasn't recuperating. When I'd end up in the hospital it was up to my husband to manage the young lively children. He was always very worried about me then. It took me a number of years before I was able to collect disability. It took three appeals.Miraculously my husband was speaking about my breaking bones with a neighbor who's a very sharp Doctor. She suggested a world famous bone specialist. Turns out that years of living with my hypoparathyroid condition can cause bones to break. I was so relieved when the doctor told me he knew what I had! He told me I was one in a 100,000 people with this condition and because there are so few people with it there are no medicines for it yet. He asked if I wanted to be part of a study where in exchange for getting X-rays bloodwork bone scans etc a couple times a year and allowing them to use the data, I'd receive $6,000 a year in medication at no cost to me! They were trying to get the new medicine approved by the FDA.  I signed up. Over the past ten years I've had to give myself injections of the trial medicine. It started off as every other day but now it's every day. The medicine was just approved by the FDA and my insurance plan would pay for it but the doctor  asked if I'd help them out and continue in the study so that they could get more data, so many participants did. It's a pain to do the injections. Not actual pain-that's fairly minor-but I usually remember late at night when all I want to do is go to sleep. I also take about fifteen pills every day for related medical issues which annoy me.
When my bones were breaking I used a scooter to get around. My kids were really embarrassed to be seen with me in the supermarket. I was pretty proud of how fast I could zoom down the aisles.
I've been hospitalized with infections or pneumonia about four times. I think the average stay is about five days. I noticed that a couple times it was in the spring so this year I'm very relieved that I'm feeling good at this time.
I am constantly thinking about how I'm feeling and aware that friends are much healthier than I am. My body is just sensitive. I really struggle every day-I rarely push myself physically because I'm convinced that I won't just be exhausted or achy fora couple days but will end up in the hospital.
People have so many worse illnesses than I do. I'm happy this is all I have. 

I live for risk

hi I am Sara Stanomior and here is my story,I had symptoms that something was wrong from age ten, including horrible headaches which the doctor's diagnosed as migraines without looking further or running any test.  It was only in 2001 when I was seventeen, in the beginning of 12th grade, that I was diagnosed with a brain tumor.  I lived in Richmond Virginia, and the doctors said I would lose my vision if they did not do surgery immediately.  Do to the location of the tumor, they decided it was too risky to remove the tumor, and instead drained it, which collapsed it. 
 Unfortunately, the tumor was aggressive, and grew in only a few months’ time, as they had diagnosed it incorrectly.  I went to a different surgeon in NYU, who told me that I needed to remove the tumor fully, or it would otherwise cause me to die, but said that there would be many ramifications, including: taking many medications for the rest of my life, due to the surgery destroying my pituitary gland; and that I would get diabetes insipidus, a urinary complication, for which I would have to take medication.  The doctor additionally told me that I would have excessive weight gain, due to the surgery destroying the hypothalamus.  I had struggled with an eating disorder throughout high school, and due to seeing a nutritionist weekly at that point I had reached a stable weight and was no longer starving myself.  Hearing that I would gain weight was the most difficult part of the surgery I could comprehend.
    I went into surgery three weeks later, and in that time the tumor moved and wrapped around my optic chiasm, which necessitated the surgeon to scrape it down in order to completely remove the tumor, and as a result I woke up blind.  The doctor told my parents that I would regain vision as I healed, and over the next 2 years I regained a small ‘pinhole’ field of vision in my left eye.  I am still very much visionally impaired, and learning to navigate the world like this has been a great challenge.  I initially was trained to use a seeing cane, but refused to do so due to the stigma involved.  It was only after I got hit by a car that I realized that I had no other choice but to use the stick.
    Another unexpected ramification from the surgery is that as a result of damage to the frontal lobe I had changes in my personality, executive functioning, and I lost my short term memory.  The personality changes were the most difficult for my friends and family; I went from a happy go lucky person to one who was not as happy.  This healed over time, although it is something I still struggle with.  The executive functioning loss effected the way I planned and thought things through, and this effected the choices I made and how I planned my day.  My short term memory loss was devastating; initially, I repeated questions every 5 minutes, but began to retain more as I healed.  My surgery was right before graduating high school, and I had a memory that had allowed me to be at the top of my class with minimal studying.  Entering into college a year after my surgery was a nightmare; as many times as I studied, I could not remember the material on the tests.  It also took me a few years of failing to realize that I could not go my intended medical school path, and had to take a detour and change my goals.  I ended up pursing a Bachelor’s in psychology, but due to the initial failures I left college feeling dejected just short of 12 credits from graduating.
    I spent the next few years working as a para professional in a school, and with intellectually disabled individuals in a home.  I had a friend who mentioned art therapy as a career path, suggesting the combination of psychology and art.  Although I was not sure it was a real profession, I looked into it and realized it combined my passions, and most importantly working with people.  At that point I went back to Brooklyn College, both to complete the credits I needed to obtain my Bachelor’s, as well as to complete the other classes needed to apply for a Master’s in art therapy.  I applied to graduate school, and got in.  
Attending graduate school was another hurdle and tremendously affected my self-esteem.  I received no accommodations from the school for my disabilities, and at one point the school asked me to leave due to discriminatory causes.  At that point I felt so low that I wanted to take my own life.  I appealed and was able to complete my Master’s.
    I am now working as an art therapist/ psychotherapist at a mental health clinic, in which I see children, adults, and families for a variety of issues.  I did not present myself with disabilities when applying to the job, due to the assumptions and discriminations that I have experienced; however, after several months I realized that it was necessary to get special programming to better see the computer screen, and therefore told my supervisors.
Although I can say that I have been able to overcome and have not allowed my disabilities to define me, I still face challenges from the repercussions daily, from my medication, weight gain, or visual impairment.  I often experience discrimination due to being overweight, and many people have perceptions that overweight people are lazy or overeat, while for me the opposite is true.  I eat very little and exercise often, and even underwent an experimental gastric bypass surgery in order to replicate the effect of the hypothalamus, which was destroyed in the surgery.  There are also many perceptions about being  visually impaired, I have learned that people do not comprehend the many different kinds of visual impairment, and expect me to be fully blind when using my cane, which initially made me feel pressured to put on a show.

keep breathing in love

Hi I am Kathy Schanazi I am fifty five years old my disability is asthma and COPD so I almost died but was rescued twice by paramedics in the ICU. I take  xolair injections which cost $700 a month and inhalers. I was diagnosed as a teenager but now as I said before I am 55 and never felt discrimination but I know it is  just hard for me sometimes  I get tired and short of breath and I hide my asthma from people because it is a stigma for me and I do not want people to know I have anything wrong with me. I don't like to promote that I have an illness or anything negative of the sort .

where is this going?

My disability post anoxic intention myoclonic encethopathy which is a disorder where there aren’t enough neurotransmitters to muscles causing jerking, degenerrtive neuromuscular disease which is ,I have an a typical muscle disease where the immune system attacks the muscles and nerves and it is periodic progressively getting worse, autonomic system nervous disorder which is Autonomic nervous system testing showed non proper like  no feeling and asthma.

I was diagnosed with Asthma at eight years old, post anoxic intention myoclonic encethopathy at twenty one years old ;and degenerrtive neuromuscular disease as well as autonomic system nervous disorder at the age of forty two years old.

I had an asthma many attacks which is how they figured out I had bad asthma. I also have intention myoclonic encethopathy, I went into a anaphylactic reaction and went into cardiac arrest she needed to be tracheotomy after that I was in the hospital another cardiac respiratory arrest six weeks later I needed second tracheotomy. I was there another six weeks I was worse practically handicapped. No one knew what was wrong and I was sent home year and a half with a tracheotomy. They sent me home for about a year and on the news there was a doctor being interviewed and it was like WOW THAT’S ME meaning this doctor was studying what I had.   We had to wait four months to be treated and he gave me an experimental drug which work well no studies shown but I was having babies so they took me off of my medicine and put me on others. 1 out of 300 people have it in America and Canada combined so it is pretty rare.

They found out I had  Degenerrtive Neuromuscular disease because bad asthma attack. Nurses noticed I was weak in my arms and legs mostly. Out of concern they called  out for a neurologist who noticed I had no gag reflex they didn’t know so they transferred me to different care and neuro saw in my scans then realized something was there.

As for my treatment plan,for asthma I take medications, four times a day nebulizer I need a nebulizer, I am injected with cortozone three a day, singulaer, I monitor my oxygen and carbondyoxide saturation levels so I can tell my doctor and I carry oxygen around

    My treatment plan for Post Anoxic intention myoclonic encethopathy is just medication

My treatment plan for Autonomic system nervous disorder and degenerrtive neuromuscular disease - changed from bypass non-invasive ventilator with oxygen always right amount of oxygen. IVs cause dehydrate easily and Pic line an IV for two months

Any therapy I had such as aqua therapy, OT, PT, speech I went to outpatient therapy but it does not help me much anymore and my doctor agrees with that so I try to stay active depending on my condition.Hospitalized more times than I can count almost always intensive care cause I fight them off  do not want to go again.It maybe hard but it made me stronger NEVER hide it. When I am not better at the pace I want to be I jump in and I do not like asking for help even to this day my kids try to convince me to ask but I still do not want to unless I desperately need it .

BRAVE BUT AFRAID

Hi my name is Jessie Maron kinda having anxiety with this but rather say my story then say nothing at all. I have a mental illnesses PTSD which is Post-traumatic stress disorder (PTSD) is a mental health condition that's triggered by a terrifying event — either experiencing it or witnessing it. Symptoms may include flashbacks, nightmares and severe anxiety, as well as uncontrollable thoughts about the event.Many people who go through traumatic events have difficulty adjusting and coping for a while, but they don't have PTSD — with time and good self-care, they usually get better. But if the symptoms get worse or last for months or even years and interfere with your functioning.

 As well as Depression which is a mood disorder that causes a persistent feeling of sadness and loss of interest.  I was diagnosed at age fourteen. I had a traumatic event at the age of fourteen that triggered my depression and anxiety.

Childhood schizophrenia is a severe brain disorder in which children interpret reality abnormally. Schizophrenia involves a range of problems with thinking (cognitive), behavior or emotions. Schizophrenia may result in some combination of hallucinations, delusions, and disordered thinking and behavior. Signs and symptoms may vary, but they reflect an impaired ability to function.

I have been hospitalized at least seven times for depression and hallucinations. It has alot of effect my daily life..I am too anxious to go out of the house by myself most of the time, i like to have a parent or someone I trust with me. I do not try to hide it, has lowered my self esteem, and I struggle alot with it in my day to day.

To many hormones Can't deal

So my name is Elisha Duvinsky, I have a disability Hypothyroidism which is when your thyroid is slow so it makes too little hormone. I was diagnosed at twenty nine years old. When I was pregnant, I went for routine bloodwork and my TSH (thyroid stimulating hormone) was high. This medical issue often appears in women during pregnancy and is quite common. In my case, it wasn't pregnancy related so I need to take medication my whole life. My treatment plan is I take 125 mcg of synthroid daily. That is synthetic thyroid hormone. By taking it, it brings my TSH levels to normal. I need to go for blood work regularly (ideally every six months, more often if dosage has changed) to make sure the dose is good, as it can change. I thank god was never hospitalized due to this. BarucH Hashem it mostly doesn't interfere with my life if it's under control. I Just need to take medicine in an empty stomach. If TSH would be high, can cause tiredness, weight gain, etc. I have never been discriminated and never effects     myself. I don't hide my TSH. It may have been the cause of a miscarriage I had when first diagnosed and that information I rarely share. It effects my lifestyle sometimes... gluten is bad for people with hypothyroid so I am attempting to be gluten free , so actually my diet has changed. I do not have to struggle too much BH. It can cause weight gain, so maybe I can blame tiredness and trouble dieting due to it, but really since medicine dose is fine, it really shouldn't give me too many side effects Thank God . 

  Hi I am Carly Schapiro's mom she wanted to do this for her you know it maybe difficult. Carly has a disability first of all so what but I will share her story for learning and understanding purposes. She started in my utero but it was hard to tell that she had a stroke at the time. Carly was diagnosed through her MRI at twelve months old and has been receiving intensive therapy since she was fifteen months old. She has CP (Cerebal Palsy).  Which made it more difficult to use two hands the doctors say it is nothing. Part of her intensive therapy was wearing on her left leg a brace for about fourteen years but it is off now and she in currently sixteen. She currently has a splint on her left arm which thank God has been very helpful to her and this one is comfortable not wooden. She developed epilepsy in the year of 2015 on August 12th. This was her first seizure so she was scared and taken by surprise she  what I felt was sadness that my little girl could not go on a trip she had waited for basically the whole summer.  Ever Since Semptember 23rd we have had no seizures and she has been taking trileptal , a drug designed for seizures. Our only hospitalization was our first seizure. If anything she feels more confident, strong and outgoing ever since. She is social at special camps Chai Lifeline and Kids of Courage and in school and feels she owns that disability more then other way around. Physically she is much slower then other girls or boys which made it difficult to be in a bigger building because it made it harder for Carly to get from one class to another so we switched schools everything was better for her . Opening jars,bottles ,caps and doing other things requiring two hands made her sad she can't do but it's been much better. Before the seizures Carly had Appendisitis which is occurs when the appendix becomes blocked,and bacteria invades infecting the wall and lumen of the appendix which made her very depressed. She now believes in herself very much.

    

All fun and games until someone gets hurt

    Hi my name is Slim Shady NAAAA I am kidding it is Brad Pittensky  I am twenty three and live in Sweet home Alabama and I have a story to tell you all so tune in I got muscular atrophy on my left leg and arthritis in both my knees and left ankle.   

When I was only eighteen years of age when I was hit by a drunk driver. I remember waking up in the pain that can only can be described if it happened to you and I wish that upon no person,it caused me pain that is indescribable. I remember feeling saddness, anger and frustration.Living with this is a challenge everydayfor thee past four years.There have been times where is just want to stay in bed and dream about never crossing that street or what I could have done differently that day but these things happen for a reason. Everyday I wake up with this and realize I lived through a miracle that day could have been my last. I TRY TO FOCUS ON EVERYTHING i can opposed to things I can't do #goals

At first I would lash out on everyone and everything surrounding me and it lives in me day and night but these days I can channel it better and more productive way then I used to. I work to make myself better and use the anger to let me function now opposed to push myself away. After my diagnosis it did affect me medically and emotionally. I am not the average guy,I can't run around and play sports or even run in general. Then again sports were not really my thing but if I knew this before hand I would run to everything and everywhere.some days are harder then other days emotionally  

Regarding my hospital treatment and experience there I met some of the coolest most outstanding people there when I was being hospitalized.To this day I still have frequent appointments there and I have ongoing treatment. Thank God/Baruch Hashem I have amazing and committed doctors and therapists after four years helping me get off my feet. I will always be grateful for all that they have done. Also just saying my sister was very much there for me and my stay treatment would be impossible without her support and she is one of the people who gave me enough strength to move forward.

Muscle Management

Hi I am Alex Cline I live on the Upper West Side on Manhattan. I am twenty seven with Cerbal Palsy or CP. Cerebal Palsy is a neurological condition with the muscles caused by oxygen deprivation. At three months old  I had early optic vision which means I was unable to sleep. I was a year old when I got diagnosed. In everyday life it effects me because I need assistance with many things and it makes your goals often harder. I am treated through physical therapy and for my scoliosis which comes with my Cerebal Palsy I receive a muscle massage. I feel discrimination all the time and it does hurt but nobody seems to care there in no particular situation but I am very hurt and feel labeled often. It brings my self-esteem more then people can tell it pulls me down. I struggle with it because I feel different then everyone else and I want to do things without assistance but that never happened maybe one day but not today. I am on social media but I try to hide it but it is easier said then done you know...well that is my story.

you heard me?

Hi my name is Abraham James before you ask I am not related to the basketball player in fact I am not close to sports inclined I am a gamer but even that is hard let me explain why before you go all mad dog on me. When I was first diagnosed it was with an inattentive type in sixth grade and I had an MRI taken they found something and I had medications then was taken off of the medications for a little while until seventh grade when I started taking natural vitamins by eighth grade my parents decided I needed to see anD GOT A SCREENING FROM THE audiologist who diagnosed me with Auditory Process Disorder s WHICH IS an umbrella term for a variety of disorders that affect the way the brain processes AUDITORY information.

 Individuals with APD usually have normal structure and function of the outer, middle and inner ear (peripheral hearing). However, they cannot process the information they hear in the same way as others do, which leads to difficulties in recognizing and interpreting sounds, especially the sounds composing speech. It is thought that these difficulties arise from dysfunction in the central nervous SYSTEM. They decided to put me on earbiotics which helps with phonological awareness. I go to a school which provides me with many accomadations to make my learning in the classroom easy even with my APD. It is hard even socially for me to answer at the moment someone asks me a question which requires longer answers it stinks but music helps me cope even if it is not always so clear.

Average girl next door

Hi my name is Brenda Red… ya I know corny name especially when you learn the rainbow and physics and about  everything else you see and learn. Enough about my last name let me tell my story so to begin I have depression which is A mood disorder that causes persistent feelings of sadness and loss of interests. In Addition I have epilepsy which is central nervous system disorder/neuro disorder in which nerve cell activity in the brain becomes disrupted,causing seizures to occur.

Now that you see where this is going I will begin telling you about my unusual but it was a journey I have found to be disabled due to  SSDI purpose due to depression. However my depression seemed a big part of my life due to AED (Anti-epileptic drug) which  was my medication Keppra .

I was diagnosed with epilepsy at the age of twenty  nine. My medication Keppra  has side effects such as short term memory loss,mood issues etc. Some of which I experienced I stumble at times,can’t access words and feel sedated constantly.  The dose needed to be increased and I was unable to to continue my work as a licensed clinical  social worker. I was not discriminated against otherwise when jobs are involved.

I may just feel this way because I am a lawyer as well have a little to do with that fact. My seizures occur more at night/nocturnal, so I require no accommodations. Some of these things make it harder for me to practice law effectively ,do psychotherapy or safely drive. Since work is part of my identity I feel empty like I lost myself.

On the other hand,it has given me better insight with my clients due to personal experience. My family and friends are very supportive despite my difficulties. They are well-educated and loving,so I am fortunate in that respect with all the love, encouragement and support.

My average day is spent trying to manage my depression and epilepsy trying to get better. It is radically different then my first fifty years.   

To Scared to sit

 Hi my name is Zuri Jacobson I am twenty five right now and I guess I am ready to explain what life with my diagnosis is like. I am in Graduate school sometimes it can be hard cause so much learning and work well that leads me into my issue so I have ADHD making it  super hard to concentrate and I also have GAD(Generalized Anxiety Disorder) which is more severe terror or anxiety then the average person so everything about school was difficult on me. These are both psychiatric disorders.

In elementary school they had me tested and I was diagnosed with ADHD at what I recall being around twelve years old that I was diagnosed.I remember a women named Christina Jonsal diagnosed me through having a conversation about my personal life. She said tjat the shaking I experience while speaking may be related to having a possibility of General Anxiety Disorder.

My ADHD causes me to be figety the whole time, I can be tapping my foot and no recognition. General Anxiety Disorder acts up more if  I am unaware of something,I am anxiety prone,overheat,can be emotionally irritable,nervous and even have anxiety attacks. 

I am on medacations to make things easier for me such as Celexa which is helpful towards my GAD it is an anti-depressant in a group of drugs called selective serotonin reuptake inhibbitor (SSRI). Also  known  more famously for treating depression. I also take adderal for my ADHD to stimulate my behavior  better. There have been no hospitalizations but am treated therapeutically. I feel labeled when it comes to dating because I never had a non-awkward but positive interaction with the other sex.

      Hey my name is Murtle the Turtle I have a brain meningoma and distonia falls under the distornian catagory tortacolis rare disability. IN 2001 my father died and every year we used to on mothers day plant flowers by moms house and all of a sudden  I was seeing people,numbness of the arm and severe anxiety. I went to a neurologist Dr. Bittle in queens  they said I could have MS so they sent me for an MRI. I tried to reach them for the results the nurse said she can't  give information 3cm something showed in MRI but  the doctor would call which he hadn't and calsafacation and google said it was aa tumor I called up the office to see if this was true it was so Dr. Benine said to come back every 2.5 years he died...It grew once but continued to grow every year I go to see the neurologist no gammas and diagnosed in late 50's. 

Tortotolis I always towards negative emotions my head went  only right I  have a neck that twists and freezes  maybe that  be neurological in mid 50's.  

My treatment plan for the tumor only observation and they tried botox in mouth and neck not exactly sure what is next. Not hospitalized.effects everyday life affects how I feel and look and effects me socially to a point I cover my mouth. Because people see my mouth is twisted and I feel I need to justify  what I have so people discrimination. It effects my self esteem cause no matter what it twists my mouth I end up bringing more emphasize to it. I also got a root canal from an unsupervised dentist. I feel a struggle but I try making a great time out of everything its like why this happened I don't know.  No therapy yet does not bother me enough to do much.

I see you

My name is Alice Miller I am twenty seven 

with Epilepsy. This is a seizure disorder where the persons brain "has a blackout" for few second called absence seizure  to minutes which can be anything from myoclonic to grand mal seizures depending on the type you  have. I was diagnosed with epilepsy when I was in ninth grade but it all started when i was in around seventh grade or so. I am on medication and go for monthly check ups to make sure my seizures are in tacked. I have to be more careful then most teenagers need to be when it comes to partying and pulling all nighters and things like that. I can not drink as much alcohol or be in settings with flashing lights at times. I am more prone to getting sick and those are some of my triggers. It did not really affect my self esteem rather it just bothered me that I could not be like everyone else and do everything regular. It made me more aware of my medical life and I am proud of  who I am. 

Hi my name is  Carrie Maslow did you ever have a dream that you can fly or something well when I was eighteen I was in love; it was not  only love but passion…it’s name is basketball I remember performing on that court so vividly. One day at a game because I planned to play college basketball after a summer of constant working . There were times that I would sweat profusely, heart racing and strong pain like firey knives stabbing into my intestines. Due to this I lost my chance on court lost my game you could say and then I learned of Dysautonomonia also known as autonomic neuropathy can be used to describe multiple conditions which is about the autonomic nervous system not working correctly and I had it sometimes I wonder if the pain is knowing I can’t play for my college or this disability that I was diagnosed with. I have been on blood pressure medication for the past five years before my doctor put me on an exercise regiment to help lessen the symptoms such as pain of a million suns.   I have been hospitalized for  two days because of my disability. My disability is not the biggest deal on earth and I have never been discriminated because of it.  

There are some complications

       Hey Benjy Lichter I have diabetes but there were some complications and I ended up needing an amputation but let me tell the story of how my foot got to the point of amputation. So I was diagnosed with diabetes at fifty years old and not to much later only six years so at the age of fifty six I got the amputation on my foot. My treatment plan is probably what you would guess I take medications, special diets, sometimes I need wheelchairs and  thank goodness they have prosthetic legs which are fully functional. I did need to stay a week for amputation recovery and about a year later I had to go back for approximately four days because the amputation had gotten infected very badly which was not fun for the nurses or myself but that is all the hospitalization that was  needed for my disability. There was a time I was labeled or discriminated against because of my disability which was when both my age and disability worked against me I am sixty three my mobility is very limited which closes doors for me whenit comes to promotions and other things. I may not like it but to bad for me I got my bag of stuff no trading now. I am scared to speak about my disability.  

Do we see eye to eye?

Hello my name is Carmin Smith I'm 40 and I am interested in educating the youth which makes me excited to share my story with you. Currently I am considered "legally blind " but I feel I am only visionly impaired. So I was diagnosed at the age of eighteen with a hereditary disorder Retinitis Pigmentosa. Retinitis Pigmentosa(RP) is in simple words three retnal (eye) cells that get messed up until you can no longer see but to be specific most paitents in the earliest time of having Retinitis Pigmentosa first you notice compromised pereprial vision and dim light vision due to the decline of the rod photoreceptors. The progressive rod degeneration is later followed by abnormalities to the adjacent retinal pigment epithelium(RPE) and the deterioration of cone photo-receptors cells.

I was an eighteen year old going into a new beginning both medically and educationally. I was a freshman in college and we had gotten in a minor car crash. After telling my parents I went to my regular eye doctor. When I failed to follow the eye doctors finger with my eyes also known as the finger test ;he suggested that I go to a rhomatologist where my father went as well (that is the hereditary part)  .He diagnosed me Retinitis Pigmentosa!  

I am affected on a everyday basis because in the suburbs no buses or trains to get around and I can't drive so it is an issue,identifcation of a person has been a struggle it can take five minutes to recognize exactly who I am speaking with or is trying to interact, everyone gets tired but when I do my vision starts to deteriorate, it is hard to navigate from place to place without a cane or someone to guide me or  else I can bump into walls or other objects and I have developed night vision where I can basically see nothing at all.  It is annoying but I make it threw.
    There are sometimes emotional downfalls that I receive because every second of the day I am reminded of my diagnosis that I am impaired things I can not do and the danger if I tried some of the few things but I am lucky there is so much I can do. I wake up living the dream of working as a defense attorney. Medically actually I do not have much on my plate aside from using my cane sometimes and past treatments such as Omega 3 and Vitamin A, I do not have much on my plate.

I have never been labeled or felt discrimanated aside from an old boss of mine but it is okay he did not know really. I live a very happy life this may be a part of my life but it is not everything.      

The only thing you have to fear is fear itself

   Hi I am Jasmine Piroles I am fifteen at the moment living in Indiana! I have something called Obsessive Compulsive Disorder. It's characterized by thoughts and fears (obsessions) that are unreasonable for the situation such as inability to go on a bus with out fear. These obsessions lead to compulsive behaviors that develop over time.I recieved the diagnoses at around the age of thirteen. I had moved away from home from all of my friends and most of my family to a new state that was much different and less desirable. My mom was always sick and one reason we moved was because of this to get her treatment. Shortly after settling into my new home I began to obsess over the thought of losing my mom and began to engage in compulsive behaviors. I get treatment for my Obsessive Compulsive Disorder which can include therapy or medication. I was very self motivated to stop because it interfered in my daily life and made me feel more out of control of what I can and cannot do, which was the reason I started to receive the treatment for me was therapy, which helped me realize why I was having these episodes and how to slowly stop the behaviors. I was never hospitalized for my OCD. I have never felt personally discriminated against for this, however it does annoy me when people take OCD lightly and misuse this term for being a obsessively tidy person or other claims that are incorrect.I am happy with what I do in my life and the help I have been receiving and very thankful for that. 

Remember when...

Hi I am Stephanie Rodriguez will be 45 in May and I am here to share my story...

I'm on the Autism Spectrum and have Dyslexia, ADD & PTSD(Post Traumatic Stress Disorder). I was officially confirmed, 2 weeks ago. I always knew I struggled to pay attention, I "f**k off to Ninaville" after someone had spoken for more than about 10 seconds, even if I'm interested. I didn't know that I was the different one, despite being told I'm odd and weird, my entire life, including by bosses. I just knew I didn't understand why others are so successful at socialising, relationships, tidying, knowing what to say, organising, jobs, being assertive and not getting picked on.

I was assaulted by a patient in December 2010, resulting in a crappy lower back.

In June 2011 I was in a car crash that has left me with constant migraines and a crappy upper. back and neck.Rx plan for my back, I was initially sent to physiotherapy, exercise lady (hydrotherapy then a gym program), masseuse. Then those stopped and, after a year, I was sent to a chiropractor.

Then I was informed I'd be terminated and paid out (the payout didn't cover the $ I'd already lost.Since this, no one will employ me. When I'm in job interviews, when they get to the sheet, where you have to declare injuries, they change the interview and make it harder, then tell me I didn't have enough experience, despite people I know, whom I mentored, being employed for the same job.Because I can't exercise, like before I hurt my back, I'm very fat. I hate bumping into people, from the hospital where I worked, because I dread bring seen this size and being asked what I'm doing for work now. I now drive three suburbs away, in case I bump into someone I used to know.I do try to hide my back injury. I can't explain it, but I'm embarrassed and I hate having to explain it to people. Things have been hard to a point that I am super angry and upset this happened to me I hate having these disabilities nothing but difficult.

Thinking out Loud

    Hi so I am Annie Forester!  I  have ADHD (attention deficit hyper activity disorder) is a psychiatric disorder of neurodevelopment type where there is excessive activity in the brain. Autism is a neuro development disorder which could have syptoms such as impaired social interaction,restricted and repetitive behaviors.  Dysgraphia is a writing disorder associated with impaired handwriting, orthographic coding  and finger sequencing. Depression is a mood disorder,a state of low mood and aversion to activity. Unilateral hearing loss also known as single sided deafness is a type of hearing impairment where there is a normal hearing in one ear and impairment in the other. 

I was diagnosed with unilateral hearing loss at two or three years old.I was diagnosed with everything else at four or five years old.I take ADHD medications and anti-depressents.

I'm 21 and I'm a photography student  at a community college and I also do advocate work for free .I was hospitalized once for self harm for two hours in January I'm currently unemployed and get SSI each month.So I only get four hundred dollars a month from SSI so I supplement that by selling prescription drugs other wise there'd be days where I wouldn't be able to get lunch or a pack of cigrettes every few weeks.

It is not something that I really do not share with a lot of people it is just something you tend to notice though it has never been easy for me.

A world of worry

I am Gitty Goldberg and I am 34 years old!!! I have a few disabilities but I am afraid to share but got to put myself out there. So lets start in my 20s I got cycolic vomittng once I start vomitting there is no way to stop vomitting. I went to the hospital many times for testing originally they thought it was a tumor and nothing showed up on any of the tests or scans. They sent someone a social worker to talk to and they found a trigger is stress! Any of the five senses could trigger my vomitting. 

Both the cyclic vomiting and anxiety affected me a lot in high school I was worse cause I would take other peoples worries and problems on myself so I worried and if couldn’t help people I would get sick(cyclic vomiting). On a daily basis I feel disconnected like I can't worry to much or else my cyclic vomiting will act up. I have Nausea medication which I carry around and diazapam for emergancy cyclic.

My Depression leads to Anxiety attacks and that leads to Cyclic Vomiting. When I am depressed or anxious with bad news I can starve myself for days causing cyclic vomiting. I am effected emotionally through bad anxiety or get panick attacks. I take anxiety medication but I have a fear that I will throw up and since people push me to take medication I refuse and am in such fear I throw up anyways . I will wake up from nightmares even if it is not real I will still take anxiety attack I feel it is real.

The only stress or discrimanationis only  labeled by my family because they think it is okay to self-diagnose me and it makes me feel bad because it is not their place. Sometimes I really do have negative  feelings sometimes but instead of help they cause me pain.

Hope you enjoyed my story of my life!!!!

The same but different

Hi my name is Megan Heller, I am thirteen and I have Aspergers,Arthritis and ADHD so lets get into MY story.I was diagnosed approximately two and a half years old went to Yale psychologist center to have her evaluation but she was at 6 months having OT and 1 years old PT,OT AND MOM HAD TO FIGHT FOR SPEECH THERAPY. 

I went to HASC a special ed school from ages 2-3. I help with things needed to be evaluated then a public school for about a year in kindergarten HANC teacher said better know now then later.To find out about my start for anxiety and add diagnoses because I couldn't sit still and had emotional breakdowns. Then I did better after medicated I did so much better and was a very smart kid if I do say so myself and had less emotional outburst increasing her ability to learn.

I was diagnosed at eleven years old with artherites but people thought I had lime disease and was tested and swelled up it felt stiff it was hard for me to walk. When tests showed clear my mother took me to a specialist called a rheumatologist. He had seen it was hereditary through my blood work. My mom and doctors had given me so many antibiotics which hadn’t worked my mom had to carry me out of bed but through the day I felt a little  better.

Emotionally and medically I am Embarrassed because no medication equals fights and major tantrums and medically I need to take medication three times a day and if I don’t have medication then it kinda controls where and when I go places.

Excuse to get out of things once in awhile and upset I can’t do certain things and Kulanu classes are done . My meds or treatment plan is such as lexapro, clonodine and many more.

To answer the question I label myself and outsmarts people and people ADD treat me different like a baby because of it but always was taught nothing can limit me and i am limitless. I was only hospitalized through EEG which is itchy well that is my story.

Hardest part is is inside disability so ots harder when she has tantrums she is seen as a bad kid. She wants to be seen like everyone else with abilities not disabilities thats the hardest of my disability. So world when will our reflection show who I am inside as mulan says in my favorite movie. No person actually believes me until they see the bad way I can act at moments my poor moments. So...I just don't understand the world!

CP=Cool Person

Hi I am Raizel Goldberg I live in Bangor,Maine and am a Jew I am in my mid 20s and I am ready to share my thoughts on my disability Cerebral Palsy which is The part in the brain that controls muscles (cerebellum) doesn't work that well including fine and gross motor skills.... I was born premature and usually most premature babies have a high percentage of being diagnosed with CP. The levels of CP vary with six the highest and one the lowest... BH I'm on level 1 and a half... I wear leg braces up to my knees and use crutches for long distance. I was diagnosed and the Dr's. already knew from birth that something wrong, I was kept in hospital for 4 months under close observation due to medical complications and when I was about a year old, they gave the official diagnosis.This affect me in every day life by,Well, I missed lots of school due to many therapy and Dr. appts... And it definitely takes me longer to get to places. Most tasks take me longer to do than my regular peers. CP can affect different areas as well... I wear hearing aids and had a para throughout my elementary school years. Some people say that it can affect a person learning wise, I have had some issues with academics and needed help with that.

Thus, effects me both medically and emotionally so as I mentioned before, I do wear leg braces and use crutches when needed. I have a wheelchair but I try not to use it only when I really need to. Emotionally I went to many different therapists throughout the years to help me cope with struggles and triumphs. I BH never had a problem socially, it was more like that I had to learn how to cope with reality - that I have a disability and this is the way it's gonna stay. And yeah, I always feel like telling those therapists if they believe in Moshiach! I have a treatment plan which isI still require physical therapy sessions to keep my muscles from getting weak and do follow ups with Dr's once in while.

Discrimination is something that when I was younger, I definitely was labeled and it was very hard. But as I got older, people saw the real me and that my handicap doesn't define who I am! I'm so grateful for my wonderful parents, siblings, relatives and friends for truly helping me out in every possible way and for believing that I could set out to accomplish anything I want to do! Shout out to my close friend for giving me the opportunity to share my thoughts! She's an amazing person and I feel fortunate to have her as a friend! Last but certainly not least, Hashem. To my Father who has given me this challenge but at the same time He gave me so many strengths, resilience to keep on going and an amazing support system! I am grateful for this challenge cuz I really grow from it and it has helped me appreciate all my wonderful blessings!

Humble with a dash of couragous

Hi my name Alexis Silver!! I came from the great city of Fairlawn,New Jersey and yes I AM 18 at the moment and I want to share my story for those who want to know. She was always placed in the lowest tracks up until 8th grade which is when they found out She’s dyslexic and in 6th grade her teacher asked if she had noticed everything looks backwards  and it explained her slow reading. Nobody second guessed it until later so she found when they questioned why some of my letters looked a certain way! It's annoying!

Her ADD,OCD and Social ineptitude came around 5th grade  never able to read people's faces well, doesn’t understand when a comment is inappropriate and too much.Which is a struggle in class when teacher try to hint or push away her comment she would say things and she wouldn’t understand to filter they get mad,bad social cues,asthma since birth it was really bad sometimes she will get panic attacks and anxiety attack which would affect her asthma barely able to breathe. Always had depression and anxiety but not discovered until high school a suicidal period so she see a therapist for that they said if you want medicine to treat all your diagnosis you must see someone,Sinusitis(major sinus infection). There was never a day I didn’t have a sinus infection  and had 3 surgeries they have been monitored.

My Everyday life is I can’t go ANYWHERE without my medications for example if I'm on a plane and Iforgot them I must miss my flight take medicine.I need to  collect my stuff like Aderall cause that is not sold in Israel. Also I am in major pain at times and due to my acid reflux; I will have to go through the day. Anxiety attacks used to be so bad that she used to rock back and forth, pull out my hair, scratch myself,hurt myself. Alexis's mom used to need to grab her hands and sit on top of her until she stopped it was really bad but she hasn’t had one in a few years thank goodness that affected around her friends,she feels like her problems are nothing compared to her friends. 

Insomnia affects her life because she can be staring at the ceiling for three hours no sleep so she will get up, she is able to run on an hour or two of sleep but a couple times her sleep deprivation a few times in high school she dropped and fainted no hospitalization but needed to miss the rest of the day. If I don’t take my acid reflex medication I can not eat all day but if I do not eat it is bad.I have had this since birth.had since baby My doctors say I have acid reflux due to my anxiety that really affected me in 9th grade when I had braces I was  throwing up often and that burned the anamel off of my teeth and needed to get bonded none of my teeth are actually real all of them are fake because there was no protection on my teeth. It’s frustrating! Cause my OCD kicks in on my dental hygiene with fear food in my mouth will rot. 

I take medication such as Adderall,Zolaf APATIHEC,TOPAMAX,ZARATONIN etc. and I see doctor,blood drawn often ,therapy so I can be prescribed and diagnosed with medication .Insomnia caused me to fall a couple times and I sometimes can't fall asleep until a few hours before I wake up thinking to myself will I fall today or not.

Anxiety attacks so bad that mom  said if not stop rocking back and fourth we need to call for help,Oral allergy  not much iron so i take iron pills. I can’t give blood but on the other hand I’m proud of my label normalize it don’t hide it they want to label me its okay you don’t know the struggle really try to surround myself with positives not negatives.

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!

Small headed

                                                  Small headed

My name is Lexi O'Malley aka Sexi Lexi my friends say I am not a big shot not the type to have a big head and I am here to tell my story and teach more about my condition. When I was a few months old my right hand started to shake, my mom said it looked like I had Parkinson’s Disease.  My feet were toed in and I was very stiff.  She said she knew there was something wrong but no one else believed it.  The top doctors at Columbia Children’s Hospital in NC said I was a healthy, alert, age appropriate baby.  That I would outgrow my feet turning in when I started to walk…well that never happened.  At 8 months old we went to a neurologist in Westchester we lived in Rockland County then who said I had a neurological disorder.  He also said I had microcephaly and was high muscle tone.  Most said I had cerebral palsy but he thought it was an umbrella term and wanted to find out exactly what I had.  Every week they took blood and would tell me another terrible disease they thought I had.  Finally when I was a few years old they did an MRI and discovered I had a rare neurological disorder called closed lip schizenchepaly.  It means the clefts in my skull did not close all the way..  They were small and bilateral and they told me I should be alright.  Each doctor told me a different age I would walk, they all said I would but I never did.  They would dangle a carrot in front of my parents with each surgery they suggested.  Muscle transfer with a body cast for months in a reclining wheelchair left me with a hole in my spine. Hip surgery,, leg casts on leg casts off, Botox injections, alcohol blocks but still I never walked. 

I am unable to walk, use my right hand or talk.  All the doctors said I would do everything.  What they were wrong about is microcephaly and low IQ.  They seemed to think I would never be able to learn anything, especially new concepts. I am in college, on the Dean’s List, Honor Society for Psychology and in the 90% for abstract concepts on IQ tests.

I am never sick (knock on wood) and only go to the doctor 1x year for my check up.  I go to prompt therapy for speech and am able to make some words.  I should go back for physical and occupational therapy since I stopped when I graduated from High School.

Emotionally I am happy most of the time.  I am lucky because my mom always believed and fought for me.  I was discriminated against in High School by the administration who thought I would never pass state exams or go to college.  I think they just didn’t want to be bothered figuring out the proper accommodations. Finally in 11^th grade they wanted to to go to a vocational school even though I was only 18 and had until 21 to graduate.  I left that school and all my friends in my senior year to go to a school for the physically disabled.  I got all 90’s and 100’s passed not just 6 state exams for 7 and got 1 wrong on the English regent multiple choice.  I graduated became student of the year for all Nassau County and my old school that threw me out, gave up on me brought we dozens of roses. 

People see me in a wheelchair and look so sad.  They always stare and my mom says “take a picture, it lasts longer”. They don’t talk to me or if they do they talk in a low, slow, baby tone.  Pity and sadness from others is the hardest.  Being non verbal separates me even from my disabled peers.  I worry about my future more than I think the non disabled.  I feel discrimination on a daily basis, whether it be physical obstacles or from people.

My condition has not gotten worse but the predictions the therapists told me when I was young and didn’t believe did come true.  I need constant assistance with most everyday life chores..

I have done what nobody thought possible with Kids of Courage though for example they took me jet skiing . I have Made friends who consistently have my back and I love like family. Thank you KOC and I hope I taught you something throughout my writing.