My name is Jennifer I am 22 year old with hydrocephalus, just trying to make friends
 

Hey

My name is Jennifer, I am just trying make friends, I have had hydrocephalus since I was maybe a month old and don't have very many friends. I was told when I took my IQ test that my scores were below mental retardation and I don't think people really understand how hard it is for us. If anyone wants to chat just send me a message. I am a nice going church girl, loves sports, played soccer, had a hard time because of the shunt. Graduated High School, can't go to college because of the mild mental disabililty, but I am a cashier and my neurologist didn't think I could do that. Feel free, to ask me any questions.

Welcome, Jennifer! :)

I know you'll love being here. We are from all walks of life, and we all understand what it's like to go through the day-to-day with the misunderstood dx of hydro (or love people who do). I am closer to 40 than I'd like to admit (less than 2 months to go :eek: ), and like you, I was dx'ed in infancy. After a cluster of shunt surgeries prior to kindergarten, along with some seizures (which I still have, on occasion), I have had only one--26 years ago last month! :) I am college-educated, married (mostly happily) for 16 years, and I have two awesome kids. My son's autism is actually the most trying challenge I deal with.

Please pull up a chair and jump in at anytime with any questions or comments. We're glad to have you!


LIZARD :)

Hey Liz, this is Jennifer, just wondering does it cost anything to be on here?

Hi Jennifer! It is nice to "meet" you. I am Heather, mom to a daughter with hydro since before she was born. You have found an excellent, and yes FREE!, website for info, friendship, and fun. We come from all over the planet, all different situations, and all abilities. But, we all have more experience than we want, so feel free to ask questions, tell us happies, cry, scream, whatever... we're here. Welcome to the "family" and I hope we all get to know you better!

Hi Jennifer! Welcome to our happy hydro home! :) I'm Jordan, I'm 32 and developed hydro as an adult when I was 26 with no known cause. I have my second shunt in, which was fitted 6 weeks ago. It's causing me problems regarding pressure right now...it's either too high or too low but I can't tell which so I'm back off to hospital this week or next. :rolleyes: This place is a pot of gold because not only do you have people from all walks of life with all forms of hydrocephalus, they're all mega-friendly and no one minds if you just need to rant and get things off your chest from the frustrations we all go through from time to time. Good on you for getting your job and proving them wrong! :)

Absolutely nuthin, nada, nyet. :) Enjoy!!! We are all a supportive, knowledgeable bunch here and glad to help with anything we can. :)



LIZARD :)

Hey Lizard

Do you have any disabilities, did you go to college? I can't because of my mild mental disability, but I am a friendly person, and I am happy that you have wrote me.

Hey spiritgal

This is Jennifer and thanks for writing, like I said I am just trying to make friends that have hydro because I feel alone. I have a mild mental disability and can't go to college, I work as a cashier and no one thought that I would do that, I love sports and meeting new people like me.

Talk to you soon

Yeah, I have some mildish issues. I did go to college and graduate, but I learned things while I was there that most people never learn in a lifetime...and I don't mean academic. :( I experienced a severe and lengthy reaction to a seizure med that taught me all about what I'm made of and changed my life completely. Even though it was 20 years ago, I will never forget what it was like. It went on for nearly three years, and 16 1/2 years after graduating dead-last in my class, I still don't know how I survived.

In many ways, though, positives came out of it. I learned to stand up for myself against arrogant, idiotic doctors. I learned how to determine what meds were okay for me to take, and which ones aren't, and it prepared me well for dealing with my son's autism.

I also finally got documentation of my learning disabilities after years of humiliation over failing tests and forgetting things I should have recalled easily. As difficult as those years were, I learned a lot about hydro, epilepsy, and how to manage my health and learn to be independent. My life is very good now. :)


LIZARD :)

Hi Jennifer!

Nope, I go to the hospital next Monday for a pressure increase. My neurosurgeon reckons I am still overdraining slightly, and my symptoms do seem to reflect that. Do you ever get affected by weather? I mean, if it's starting to get cloudy or rain is coming in, do you ever feel worse? I seem to be hyper-sensitive to weather changes with this new shunt. Only had it in 7 weeks so I'm still getting used to it! :)

I am being curious... and you don't have to answer if you don't want to, but what disability is it that is keeping you from going to college? There are such great accomodations that can be made that I don't know why you couldn't at least go part time. You just seem to be disappointed about that, and I can't blame you. I am going to college again and now that I have a family it is more difficult, but I am doing it because I *want* to very badly. I just think it may be worth looking into.

Ok so I didn't have hydro my first go around at college, but I had a physical disability that due to taking lots of meds slowed my brain down and I need extra testing time, a scribe, and lots of other stuff. Second go round I had hydro and it really didn't affect my schooling, but once again my physical disabilities hindered me.

By law all colleges and universities have to have an office for students with disabilities. If you had an IEP in high school, they should be able to transition it.

Is there a community college near you, that you could take one class a semester? Don't give up. I can be done, you just have to tap into the right resources.

Cant they get you training in a technical school? I went through UF with Voc Rehab.

How long ago was your IQ tested? Maybe you need a new evaluation to see it has changed.

Just some suggestions.

Hi and welcome! I am just a Mom and unregistered RN, unlicenced NS etc. I have learned a lot since my daughter was born, and it is informative as to what grown ups go through. Again, welcome, there is a wealth of info here!:)

I honestly think that if you have the desire to go to college, nothing should stand in your way. I am back to college after a 7 year break, a marriage, 2 kids, and now I have to work full time, but I wanted to go back so badly that nothing was going to stop me. It sounds to me like you have that desire, so find someone that is willing to help. If someone says "you can't" move on to another person! I really don't mean to sound pushy, but I hate it when people tell me I can't do something because of _________. It just gives me more drive to do it! Good luck.

Hi Jennifer
 

Hi Jennifer, Glad to see your here. I hope everything is going good. I am at work so I can't be online too long, but wanted to check in.

David

Hi, Jennifer
 

Odd question, but have you ever lived in the Houston area?

I have never lived in the houston area, I have really never traveled around because I guess you could call me a scaredy cat. I have had my same shunt since I was probably 6 and I am just trying to make friends, but it is not working.

Hey David

How are you, nice to hear from you again. I check my e mail to see if you have wrote me there but I don't see any, so I figured I might run across you here.

You know Jennifer, I completely understand the scaredy cat thing... I took one trip right out of high school and couldn't wait to get home. My husband wants so badly to move out of state (to Wyoming from Nebraska) and it petrifies me! I hate to be where I don't know anyone... and where my parents aren't a phone call or 5/10 min. drive away. :)

Hi Jennifer
I am the Mom of a 18 year old with Hydro and a host of other conditions, he is going to college, he has some help from the college special services, he too is having problems with finding friends, I think everyone feels that way when they are a young adult or in college. I also am a Job Coach at a Vocational Service for adults with developmental disabilities and we help people either get ready for school or work, or just help them with daily living tasks depending on their wants and abilities, maybe you could see about a vocational service in your area. just one more idea. It is great you have a job, and you don't sound like a scaredy cat to me, sounds like your doing great. Plus you seemed to find some new inter-net friend right here with us.
Hope your having a terrific day, glad to meet you
Deborah

Told you it was an odd question!
 

Jennifer,

The reason I asked if you'd ever lived in the Houston area is that I once met a young woman with hydrocephalus named Jennifer who had the same job you do. I lost her email when my computer decided to dump everything I'd ever done. I was just wondering if perhaps you were her.

I'm glad you've found this group, there are wonderful people here.

I look forward to talking to you more in the future, I'm always eager to talk to adults with hydrocephalus, as y'all are able to give me some ideas about what to expect as my daughter gets older.

Take care!

Hey AustinMom, so what is Austin going to college for, and where is he going? How long has he had his Hydrocephlus, and does he have a shunt? What other disabilities does he have? Does he get the help he needs? Hope to talk to you soon!!!!

Hi Jennifer
 

Hi Jennifer...I finally found my way here from the now apparently defunct Braintalk 1. I am 38 and have had hydro all my life...could always use another friend..I have lived the full spectrum of experience with hydro and would be happy to be a friend or just an ear.

I look forward to knowing you more..and welcome

Jennifer,
Austin’s going to college for a Associate in Science Degree, (this takes 2 years) he then wants to go into neuro-diagognostic technology ...an EEG Tech (this takes 2 years) then he wants to Transfer to a 4 year college and if he can he wants to become a Neurologist specializing in Seizures and Hydro. Austin is going to a junior college in Orange County California How long has Austin had his Hydrocephalus? Since he was 6 weeks old ( he had E-coli meningitis at 2 days old ) he had one shunt then at 14 they had to place a Second shunt into a cyst or entrapped ventricle, so Austin has had Hydro all his life and now has 2 shunts, one is programmable Austin has many other conditions, he has a seizure disorder, DRD dystonia, he is Ataxic, has tremors, he is deaf in his right ear, he had a colloid cyst that was removed and he got really bad short term memory loss with that operation, he has some writing and thought processing problems, Austin has many conditions, and many revisions, but he really doesn’t think of himself as disabled just thinks he has to work hard to get anything :rolleyes: Austin rides the bus, he cant drive a car, he cant ride a bike he has balance and multi-task issues, but he can do so many things he won 5000 in scholarships for college, he is living with a family on his own, he came up on the bus this weekend he can do everything, but, Does he get the help he needs?..... boy...:confused: no, he could use much more help, but being an adult the colleges only do so much, I think it could be better, yet his college counselor seems very good and they are helping quite a bit, with extra time on test, note takers and a quite place to take test, but with Austin's short term memory loss it can be hard for him to memorize everything. but every college is different, there is a college in Palm Springs California who specializes in people with conditions of the brain, seizures, Hydro, a many conditions it is called the college of the desert Austin’s Neuro talked to us about it, and I am sure there are many other schools who have programs of all sorts, College is never out of your grasp, you can start slow one or two classes and work up to more and remember to check on vocational services. Austin is up this weekend and I will ask him to read your post he E-mails a group of young adults he meet at the Hydro Conference from last spring in Baltimore and 2 years ago in San Francisco, maybe he could private message you and the two of you could talk over the inter-net, or he could just post to this forum, what ever you like it may take him a few days he is up to visit some old friends this weekend, but I will talk with him
My son is a wonderful person, and a great friend I am a better person just knowing my kid, he is great, sorry this was so long but I guess I wanted to talk Too:D
Hugs,
Deborah

Hey WmM3 I am glad you are going to be my friend, the reason we don't have friends is because we are different because of our hydro, What kind of hydro do you have? Hope to talk to you soon!!!!

Hey Deborah

I like to talk to and I am glad it was so long, you seem like the only real friend I have on here and I appreciate it, tell Austin to drop me a line anytime, like I said I don't have very many friends. Will Austin have to have any revision, my neurosurgeon told me maybe in two years I would have to have one, I hope I am ready for this one, considering the last one I was five or six. I am going to take a compass test on October 4th to see if I can get into a Community/Technical College. Does Austin have any remedial/special education classes? How often does he go to the ns? How often does he have a CT scan? Hope to talk to you soon!!!!

Hi Jennifer How are you doing? I have been very busy with my kids sorry I have not posted much
Hope things are well with you
Deborah

Thanks Deborah

No one is talking to me, and I am on here almost everyday, and it is ok, if you are busy, I also have time to talk. How is Austin? How many kids do you have? What do they think of Austin? Is his college life going better? How often does Austin go to the NS? Hope to talk to you soon!!!!

Jennifer

Hi Jennnifer,:)
Some times you need to post a question for people to write, due to this being a long 3 page post. amke a new one. maybe if you write a new post others will write.
Austin is doing pretty good at school, he took a test and he got a B I have 2 kids total Austin and my 7 year old daughter, she just loves her brother, what does she think of Austin???? She knows Austin has conditions Austin has Ataxia and dystonia so he can fall or lose the use of his legs wobble around a bit most the time he is just fine, but she only has known Austin as he is so she just thinks it’s her brother, that’s all and she wants him to play as often as he will. Roommates seem to be always a sticky wicked but he is doing good in college. Austin sees his NS 1 time a year just to check on things. How often do you go to your NS? Also the original brain talk is back up the site where most of these people came from I am going to post there I will check here now and then but here is the site you maybe able to use your same name to post there but you must register first, it is a great site and some of the nieces people did not find this site so you may want to check this hydro site out. http://brain.hastypastry.net/forums
I hope to see you there it takes a while for it to process but if you turn your computer off it may register fast when you re turn it back on and go onto Brain Talk
Will check on you
Hugs
Deborah

Hey Jennifer,
I'm glad you're able to get some input here. The college thing can be difficult, but what have you got to loose by applying yourself. The school should be able to help with some sort of accomadation, if you need it. Do it for you. Do it for your growth and the mental challenge. Do it because you are worth it. This is about you :) , don't let others alter your ambitions.

David

hey Jennifer.I came here for the same reason......I really feel quite lonely too.I don't believe hydro can stop us from doing anything we want.I am studying medicine and want to be a psychiatrist.Currently I am off school because in 2009 My shunt "died"but it was not diagnosed right away.Anyway,feel free to pm me.

Hey Jennifer! Nice to meet you!!!

Hi Jennifer, My name is Carrie and I am also 22. I am always happy to talk to anyone with Hydrocephalus as I really do believe that no one gets it unless they go through it, I get so sick of having to explain what Hydrocephalus is to people!

I will be 44 on the 16th, but I definitely agree. No one really appreciates what we have to go through, unless they have it themselves.

I was married for eight years to a woman that wish my health problems 'would just go away'. When my health went south, she dealt with it by being totally ignorant.

i have had the same issues with people, I'm a university student at the moment and even trying to explain things to the lecturers there can be a nightmare!