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About NeverGiveUpOnLife

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  • Birthday 11/22/1995

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  1. Well my doctor has been confused lately, and today is the day I find out what's wrong with me. For 9 days I've had symptoms that I wasn't used to when I have a dysautonomia episode. I've been having night sweats, more tired than normal, went from 126lbs to 116lbs in 9 days without trying, and 2 days ago started having this pressure/squeezing pain in my upper left stomach under my ribs, doctor said it was my spleen and that it was enlarged. So she told my mom and me to go to the outpatient children's hospital to get blood work done and we did. She called yesterday night and told my mom and me t
  2. I've had so many concussions through out the years and I thought I was getting better at noticing when to sit or lay down before I actually pass out, well last night I was in the bathroom and went in a cold sweat then lightheaded and passed out and ended up hitting my head on the heater, I didn't have enough time to lay down. What are some ways of dealing with passing out? I'm not going to have any brain cells left if I keep hitting my head lol. is there anything to do to fight it long enough to get in a safe spot first?
  3. Thank you so much everyone, I'm emotionally feeling better after reading everyone's comment thank you!! I seen a therapist when I was 15 and honestly I think I was given the worst therapist in the world, he kept telling me "always remember people have it worse than you do, some people go through tougher times" - don't get me wrong I completely understand that people do have life worst than I do and I feel so much sympathy for them but I went to him to help ME and MY LIFE and all he did was make me feel like I need to stop "complaining" that's why I stop telling my mom and close friends when I'
  4. I was born with Birth Dysaufonomia and on my medical record they have it listed as familial Dysaufonomia because they are almost identical. As I get older I notice I get sicker, I'm 17 now and I go through times of "remission" where i feel very healthy! Sometimes I forget that I have this illness because of how good I can feel during remission. Then unexceptedly I go into autonomic crisis and then reality hits me on how this illness ruins my life. The doctor said most patients live til 35, I'm scared of dying. My cousin had this and she died at 22 years old. My uncle made it to 29 years old. I
  5. Everything by Lifehouse Stand by Rascal Flats A little bit longer by Nick Jonas Pray by Justin Bieber Hold on be strong by 2pac Ronan by Taylor swift I won't give up by Jason Mraz (my favorite!!)
  6. Hey everyone I was interested in knowing when others go to the emergency room, like how bad do your symptoms have to be before you decide you need to go? I've been to the hospital to many times and realized all they do is admit me and load me up on medications for blood pressure,heart rate, and fluids. Last night my heart rate went up to 186 while laying down but I didn't feel that sick all I had was pressure in my chest and half way down my left arm- I know some people say when ever you have pain going down your left arm with chest pain/pressure then you have to go to the hospital but I have
  7. I've had seizures since I was 3 years old, I have absent seizures and had 1 grandmal seizure (thank god I don't have any more of those!) I'm on seizure medications and now I only have 1-4 seizures a month hopefully I can stop having them forever
  8. It's very confusing lol They should just make it half red and half blue- I wonder why dysautonomia doesn't have an official color?
  9. On dynakids they say it's red. However others have said it's blue- which one is it? i have familial dysautonomia and on the FD website they don't mention a ribbon. I'm confused between red and blue now lol does anyone know the right color for it?
  10. Hey everyone, I’m Jillian and I’m 16. I've been sick since I was 3 years old. At 15 years old I was finally diagnosed with Dysautonomia by a cardiologist. 8 months he had me on the same medication, and it didn't help. He kept saying "wait another month and see if it works, sometimes it takes a while". Well I’ve waited 8 months with no luck. So i went back to my neurologist and after he found out I was diagnosed with dysautonomia he said he really doesn’t know what treatment to try next (he was really nice and acts more like my friend than my doctor lol) well he said he would refer me to anothe
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