I can so relate with your sentiments on this beast. I keep being told god doesn't give us more than we can handle but boy do I wonder sometimes. I think god is trying my patience and knows I have a big mouth and will educate a heck of a lot of people about this damn disease. I have done that with my 3 children getting Lupus and then myself, my daughter developing (POTS) & now me with this IIH along with some other unknown yet problems still trying to figure out why no blood flow to L side of brain and why it is assymetrical.
Hang in there and know you aren't alone in your disease or your thinking. We all feel this way at some point or another it is the grieving process of what we have lost I think.
Melinda

Faith, I think Melinda hit it right on the head. It is a grieving process. Except no one told us it is This, is something you have to figure out yourself and then try and deal with it.

As with a death, we can go thru all the 7 stages of grief, and then back again.Only problem is, we are not dead or dying. But , we do have to say good bye to who we were, before, and all that our lives once were.

This , I think , is the hardest part of the illness.And one that is never addressed by the medical profession. We are not given the tools to help us cope and to deal with it all. At this point, I was afraid it would swallow me whole.

I have been thru this "part" twice.Both times it wiped me dry. The first time, after about a year of diagnoses, when , altho I had done everything I was asked, nothing was getting better.Also, my NS let me go as a patient. I was devastated. But, the poor man, who was almost as upset as me, could do no more for me. There are to be no more surgeries in my world.
Another chip knocked from the ever decreasing lump of hope.

Now, in the past few months, I am again struggling. I know too much. I know they cant help me any more, that this going back on Diamox is only filling time.
I have really become aware of the long term prospects and what my future holds for me. It makes my blood run cold, with fear.

But, I refuse to give up what I do have ! I try my damndest to make every day count. Maybe I clean the house, maybe I only get as far as making dinner for my long suffering family. But , I have to have a goal for every day. When I feel the black cloud descending, I garden.I will do any think I can to keep the bad thoughts at bay.

I to have control issues. I work with them now. I find ,educating myself is one way to have control, at least with the drs. I also post here and try and help. I can no longer work so I try to help as best I can , to give every one some more control back. Does that make sense?

You might want to look up the different stages of grief. I bet you will be surprised at how many you may have. It does help to know them, so you can recognise them when they hit.
But, know, you are not alone with these feelings. We share and we will help all we can to deal with them. Keep posting. Keep venting and questioning. We have your back Faith, and will do all we can to help. Cath.

Hang in there Debi. I think the patient conference will help you..see you there...Paula
P.S.....Cath is so right about the greif..what would we all do with out her...

I really hate knowing that there is someone else out there that feels this way about there life. I have been to counclers and tryed to over come this "monster" and the one thing i think that helps the most is the "monster" (my dog). There are days that i really feel like nobody gets it or that all this pain is just one more reason to give up on all i have accomplished. But i rememberr that every morning i have to take him pee and feed him and that its not just me that i am watching out for in this world he is doing the same for me he is quiet and understands that sometimes there are no way to relieve the pain but to lay there and just take it. But i know that without me he would have nobody and thats what keeps the "monster" out of my head and out of my life.

Hope this helps.
MandyRee

Hey Debi,

There will be a HUGE hug waiting for you when we meet at the IHRF Conference. Hang in there until then.

Looking forward to meeting you!

TJ

Thanks everyone...doing better today...

Thank you Cath..for the pep talk..it worked..

debi

IH Conference for patients? When? Where?