hi its ashley gray i have iih and have had it for three years im on my tenth operation. the shunts work brill but my body keeps rejecting the cf fluid so shunts have been in and out and the tubing has been shakin all about ha ha .got a brill nuro surgen but even hes baffled .i just seem to swop one type of pain for another though (really depressing) im married to derek and we have two sons (so off the bridge is not an option) ive lost my job, my hobbies, ive lost me. im gonna have to rebute just dont know how to do it .didnt drink ,smoked ,or take drugs.so think i should have been a bad girl when i was younger ?

Hi Ashley and a warm welcome to the group. How frustrating that the shunts work but your body is keeps rejecting the csf. I understand exactly how you feel because I lost my job through this as well and have had to completely change my life again after the surgeries. You do go through a sense of feeling like a shadow of your former self, and in a way you do go through a mourning period because you have lost the person you were, and this is a perfectly natural response to everthing you are experiencing.

This disease is a very hard one to live with, and there are no difinitive answers to why it occurs, which makes it harder to understand and that's why you are left with "Why me?" We are here to help you adapt to this disease and to find ways that will enable you to not only establish a new you, but find the old you too. This is possible as we know from our own experiences, and from learning to do things differently to allow us to have a very reasonable quality of life.

Although this disease isn't life threatening it is lifestyle threathening, and people find that hard to understand when they cann't see it, or haven't even heard of it, and this makes it harder for you to cope with because you feel isolated.

You have a good Neuro who you seem very happy with, and although he may be baffled he seems to be trying to do everything he can to help you. Please don't give up hope, I know it's hard expecially when you have had to many surgeries already. I too had quite a few surgeries in a row over 18 months before finally everything went the way it should, and as you will see from other members stories they have too.

Please remember you aren't alone, we are all here for you to support you, help and advise you and even to hear your rants when you need to vent. Our members and team are all very helpful and supportive and will be a great support and reassurance for you.

If there is anything you need to know or you just want a chat, just PM me or any of the Admin or Moderators anytime.

Heidi

hi Ashley

Hi Ashley! Welcome to our group! It sounds like you've been through so much in three years with your IIH, I can understand your feeling discouraged. *hugs* I'm glad you've found us and I hope that being here will help you to feel supported and encouraged from others who are dealing with a lot of the same issues. Try to stay hopeful! You are not alone!!