I feel like cutting my head off!

[Zenji]

For a long time I have headaches and depending on which ones I was having determined my day. Recently I started having low pressure headaches like the ones after a spinal tap. It is so bad and with school starting soon I really can't deal with this kind of headache. I called my doctors office a week ago and told them I have been having this problem for a week. I was told that someone would call me back later after they talked with the doctor. Well yesterday was a week after I first called and nobody has called me back so I called again yesterday and was told someone would call me back in ten min. after 20 min. I called back and they were at lunch.vI still haven't heard anything. I did some research online to see what could be causing these headaches and everything came up with shunt failure. I have two shunts VP and LP and I know that them failing is a big deal and can be very serious. I have had my VP shunt for almost two years and I was told the first one never last as long especially since I was on alot of antibiotics. This isn't really a question or anything I am just so frustrated right now. I hate being ignored especially when I know something is wrong. I would go to the E.R but anytime in the past that I went to the E.R I would wait forever only to be told to call my doctors office in the morning. Plus I really hate hospitals most of all E.R's they never seem to understand that my headache isn't as simple as theirs. Sorry but I needed to vent to somebody thanks for listening to me rant.

[Zenji]

God definitely made my little sisters so cute just so I couldn't stay mad at them. The youngest is going to be such a handful when she gets older she already is now. As far as flying I go to Baltimore at least once a year sometimes more and every time I have flown alone. Mostly what I do is take a sleeping pill. It is only a two hour flight so I dont go to sleep but it slows my body down so I don't have a huge problem. Mostly I explain the crying as just being so happy to see my family. Basically before every flight I always take a low dose sleeping pill and zantac because I always get heartburn my I have my attacks I also take a benadryl  because the first couple of times i flew i always got a sinus infection and since I started taking those before a flight I don't have as much of a problem. Sorry it took me so long to comment back my doctor cleared me to go back to school and it starts on the 31st so i have been so busy and am still not going to be ready.

[bubbles0309]

lol same here they cant use the word hate but the little one goes ''im not happy at u stephni'' lol and i say sooo and he does this thing with his lip and he pokes his bottom lip out and starts to have tears in his eyes and everytime i jus end up hugging him i cant stay mad no matter what he did lol but yeah i end up going to the e.r without knowing i have to go when i start crying and i hate them to see me cry they get scared so thats why im in new york now but since im doing a little bit better im going back to ft.lauderdale on the 25th this month so they are xcited im coming back i just pray i dont have an attack on the plane thats my biggest fear cause theres nothing they can do on the plane to help me so...hope i get there okay and they dont see me cry once i step off.

[Zenji]

for right now i know they are in the best possible place. i go to the hospital at the last minute sometimes they don't need me just disappearing and wondering where i am. Although I know that they are getting older our talk was mainly that I get really bad headaches sometimes so i need to rest when they go away and that sometimes i get sick and i have to go to the doctor and the doctor likes to keep me until i get better. They haven't had any negative experiences as far as doctors or hospitals go and i want those to remain a good thing for them so they are scared of going to the doctor if they are sick even though the 5 year old stefi hates shots i feel bad sometimes because i laugh at the fact that nothing in the world scares her except for shots. The last time it took 5 people to hold her down to give her one shot it was funny because she is so tiny part of me wanted to cry though i hate to hear her cry but afterwards because she thinks nobody else heard her screaming she comes out and tells her older sister "see its not that bad shots don't hurt your such a cry baby" it amazes me sometimes the things kids say. I was thinking about this the other day she really does have me wrapped around her little finger and she knows it if she gets in trouble for something she just says "sowy I love you tina did you know you are the best sister ever i mean like really the best sister not many people can say they have the most awesome sister in the whole world but i can" so then after i realize that this is the same thing she says at least twice a day and i tell her to go sit in time out she screams how much she doesn't like me (the word hate is strongly forbidden in my house) and i am not her friend anymore.  

[bubbles0309]

AWWW!!!! omg (tear) lol my bro's r the sameway we were on the phone the other day he asked me are you better yet? when are u coming home its like uh some of their questions u dont know how to answer but at least they understand were going thru a tough time so i told him i promise to take him trick or treating this year since i missed this year and i dont care if i have to wheel chair it im going to take him cause kids just make the biggest impact on a persons life...but before all this happen i couldnt work and stuff so i would just sit on the couch and the older one he's 12 he has autism so its kinda hard for him to understand things at first so he goes ''go get a job couch potato'' it hurt me cause he's not used to seeing me like that im always out and the other day on the phone he told me stefani im sorry what i said i know your sick and i want to help you feel better and i was like wow im so glad he understands i guess my mom sat him down and xplained...he asked if i was going to die i wuz like omg no! but wow congrats on the custo and ul be in my prayers but u have it tough just take it slow in time they will be with u im sure the state understands....

[Zenji]

I totally know how you feel I am 21 and I was about a semester away from my A.A when all this started and then I got custody of my brother who is 18 now but he is a huge help. and my little sisters are 5 and 8 now and then are still in foster care because with all this I know I can't care for them but they spend a lot of time with me my 5 year old sister loves thomas the tank engine and hannah and my 8 year old sister loves hannah disney princesses and hannah they are a huge force of what keeps my going and after surgery they always want to kiss my "boo boo" to make it feel better.This year has been a hard year with them but its looking better. It has been hard for all of us. My little girls are the joy in my life and they are so cute and helpful. The other day they were fighting with each other and when they started getting loud the 5 year old said "shhhhh! Tina's head hurts we should be quiet we will finish fighting later okay so just be quiet and go play in your room now!" it was so cute

[bubbles0309]

lmao i have a little brother thats 8yrz and he is the same way about hanna. but i do understand im 20 im used to partying and ect...and recently got my life together and the same day....the same day i was going to start school it turned out i ended up in the e.r and had a tethered cord syndrome surgery which lead to where i am today with chiari and its good to keep a positive aspect in mind cause if we dont try we will drive our self insane then they will put us in the nut house and really think were drug addicts but i have my two little brothers that keep me going and keep my mind focused on skool and doing better for myself if it wasnt for them i would be soooo gloomy listening to nirvana ''dumb'' over and over again it fits my life but hey i have to stay strong...and sometimes i do let it get the best of me and break down and cry but when i cry i cry hard and have an attack of the headach and to the e.r i go! woo--who!! lol soo im trying to control that too...and talking i can qo on for hours about depression lol well inna good way....its good to let it out. called the zipper blues but at least they got u wit the april fools lolz but joking can be good but realize when its serious at the sametime...hard but try

[Zenji]

Seriously I went crazy after being in the hospital for 45 days I can't imagine three months. I am lucky cause there is only two people that I didn't like and because I became such good friends with the supervisor she never assigned those people to me again she always came in prior to ask me who I wanted for the next day. They knew me so well they posted a security guard at me door for april fools and had lawyer come tell me that in a hospital april fools day did not exist and they even suggested I get a room with a view and a shower (i got it). good results for me would actually be an infection because then I would only have to do outpatient antibiotics where as no infection would mean surgery to replace my vp shunt. The thing is even though I have only had this diagnoses for 1 year and a half I would never get through it without finding a positive in it. I have been told a joke too much about my problems andI think I can't joke too much and two I have siblings who look up to me for everything and if i freak out and start living every day as if i have this debilitating condition that dictates my every minute (even though it just about does) I would never have time to fulfill my dreams and hopes. I like most of my neighbors would use it as excuse to be miserable all the time and I find no joy in that. Even though because of this I probably won't be able to have much of a career because of all the days I physically can't get out of bed or to work for one reason or another I still want my Phd. Even though it is as hard as hell to stay positive about even the worst news I have to because if I don't it is a downward spiral if I slip into negativity. Sorry I tend to talk forever but I have to go anyway I have a five year old sister who won't go asleep until I put the Hannah Montana DVD in for the millionth time.  

[bubbles0309]

lol thats good! yea i was in a hospital up here for 3months in a row and no matter how comfy i was at first i ended up hating it and knew everyone as well i even knew who the staff didnt lyk lol but hope u get good results back keep me posted

[Zenji]

I can't get an mri something about my Lp shunt not being compatible  with the mri machine. currently we are waiting on cultures which take like 3 days the main thing they are worried about is I had a severe infection after they replaced my Lp shunt in febuary and they just want to make sure that they infection didn't go through the shunt into my spine so i guess i will find out in three days. meanwhile this new hospital is truly beautiful and the room is bigger than my entire apartment. I have been here so much I know everybody that works on the floor so i dont have to eat crappy hospital food. I guess i can survive here for three days

[bubbles0309]

oh well its best to try to get mri's and emg test ..ct i think are a waste of time but they must do what they have to so they can rule everything else out but thats nice u get a good hospital u should go to clievland clinic their the ones who figured out i had chiari but didnt want to do nothing about it so thats why im in NY now i should be back in ft.lauderdale at the end of this month and may i ask did they check the shunt i would raise hell and talk to the president of the hospital smh....i would b pisst but r u currently being hospitalized now or did they figure something else out? and did u ever get a dx?

[Zenji]

Ok I went to the dr's office demanded that someone talk to me so 7 hours one ct scan tons of blood work and a lumber puncture i find myself in a hospital room. good thing is they just built a new hospital so i am in the new part it is truly beautiful. I wouldnt know how to spell my doctors name if i tried but he isnt a chiari specialist and i am at halifax hospital in daytona beach florida

[bubbles0309]

lolz wow qood luck on feelinq better...and yea imma bout to do the same im tired of this doc he thinks jus cause he's da best "in NY" he doesnt have to do nothing else after the surgery imma bout to but in a few laywers n say patient negligence but i dont want to cause its like taking away one more person who close to solving a solution to chiari so idfk im fed up but my damn shoulders r starting to hurt again cause of the headachs so i feel where ur coming from who's ur doc by the way? and what hospital

[Zenji]

This ridiculous 3 weeks with a low pressure headache and nothing from my doctors and they have know for two weeks. I can't do this much longer. I scream when I have to get up to go to the bathroom. I am going to my doctors office to day even though I will be in pain the whole time. I figure they will see me and do something or call security on me. Which isn't that bad because all the security guards know me from an event I did the keynote for so they like me more than they like my doctor. Wish me luck!!! If I disappear it probably means  I am in jail for beating up my doctor...jk

[bubbles0309]

we all noe how u feel....specially after surgery they think everything just goes away uhg...