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 I CAN'T TAKE IT ANYMORE

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IC Queen



Posts : 42
Join date : 2016-04-13

PostSubject: I CAN'T TAKE IT ANYMORE   Wed Jun 15, 2016 9:53 pm

It's the IC Queen (IC for 40 years). Been everywhere, done more things than I can remember. Was married to an Infectious Diseases MD who trained at DUKE, a top US med school. Went to all of the NIH IC Reseach meetings until last years. Too in pain to attend any more. But I am to the point that I just don't think I can take the pain another moment. It is just ungodly pain that you could never imagine if you didn't have it.
Wanted to tell everyone there is a cable actress/ writer named Lena Dunham in the US who has said she has IC. Link on IC Queen
"Goodbye everybody it's time to go. Got to leave you all behind and face the truth. Mama, I don't want to die, sometimes I wish I'd never been born
at all. Body aching all the time. Carry on, carry on."
FM
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dantheman



Posts : 130
Join date : 2016-04-04
Location : Adelaide

PostSubject: this disease is horrible. pain for the sake of it. my god.   Thu Jun 16, 2016 2:50 pm

I feel your pain. Keep searchimg and fightingfor those that come next
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summerly



Posts : 16
Join date : 2016-01-11
Location : Qld.

PostSubject: Re: I CAN'T TAKE IT ANYMORE   Tue Jun 21, 2016 10:55 am

Hi IC Queen,

I was just wondering how you are going? From your post you seem to be very overwhelmed with it all and I am wondering if you are thinking of suicide? If this is the case please reach out and talk to someone and if you need to talk to people who understand this condition then we are here - I get notifications of private messages and am able to reply quite quickly. Hope you are okay? Smile
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dantheman



Posts : 130
Join date : 2016-04-04
Location : Adelaide

PostSubject: IC queen are you OK   Tue Jun 28, 2016 6:54 am

IC Queen wrote:
It's the IC Queen (IC for 40 years). Been everywhere, done more things than I can remember. Was married to an Infectious Diseases MD who trained at DUKE, a top US med school. Went to all of the NIH IC Reseach meetings until last years. Too in pain to attend any more. But I am to the point that I just don't think I can take the pain another moment. It is just ungodly pain that you could never imagine if you didn't have it.
Wanted to tell everyone there is a cable actress/ writer named Lena Dunham in the US who has said she has IC. Link on IC Queen
"Goodbye everybody it's time to go. Got to leave you all behind and face the truth. Mama, I don't want to die, sometimes I wish I'd never been born
at all. Body aching all the time. Carry on, carry on."                                          
FM
Hey IC queen are you Ok?
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IC Queen



Posts : 42
Join date : 2016-04-13

PostSubject: Re: I CAN'T TAKE IT ANYMORE   Fri Jul 01, 2016 12:41 pm

Yeah, I have had IC for more than 40 years, never a second in all those years without horrible pain. Now I don't know anyone who has had it as long as I have. Many IC friends gave up the fight through the years. My mother didn't want me to do myself in and I wanted to please her. Every single day is pure torture, what am I living for? I hope I did my part to advance our cause. I joined the ICA in the US quite early, served as a State Coordinator, then a Pt. Support Advocate. I was on TV with Dr. R. Evans years ago, wrote a state newsletter for >500 members (pre Internet), held state wide mtgs, started support groups in 6 cities, was in many newspaper articles, on radio, went to DC multiple times to talk to Congress people, and spoke to hundreds of people with IC worldwide. At my state mtgs, I had speakers like the CEO of the Elmiron company, etc. I lived in England in my 20's when the rock group Queen was pretty big, hence my "name." My "Goodbye everybody" above in quotes is taken from Bohemian Rhapsody, often chosen best rock tune of all times. Those words from the song expressed my feelings better than I could myself. FM is for Freddie Mercury, author of the song. Of course I am suicidal. I would be insane not to be with this length and intensity of pain. This group has kept me hanging on a little longer, hoping for just a bit less pain. Thank you summery and dantheman for your responses!
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IC Queen



Posts : 42
Join date : 2016-04-13

PostSubject: Re: I CAN'T TAKE IT ANYMORE   Fri Jul 01, 2016 12:53 pm

Sorry, summerly..not summery. It took the l out for me. Sorry, but thank you and dantheman so very much for caring enough to inquire. That means a lot to me.
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dantheman



Posts : 130
Join date : 2016-04-04
Location : Adelaide

PostSubject: Re: I CAN'T TAKE IT ANYMORE   Fri Jul 01, 2016 1:30 pm

I won't be waiting 40 years. It cuts me up because i have a young family. Fancy not making diseases like this one a priority for research. They first recognized it 130 years ago and yet lots of theories and no real understanding. You know you're in trouble when they call it a syndrome.
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IC Queen



Posts : 42
Join date : 2016-04-13

PostSubject: Re: I CAN'T TAKE IT ANYMORE   Fri Jul 01, 2016 2:15 pm

I have incredible friends who have stuck with me all these years. One just asked me if I remembered when I rode a tricycle! Well, uh no. But I am so happy to have friends who can remember that. However, my 2 brother's wives and families are another story. My parents lived until ages 88 and 90. The families of my brothers decided to be even crueler to me after they passed away. Does anyone else experience this with their family members? It's bad enough to be in horrible pain for a lifetime, then get stomped while you are are down. I never could understand the cruelty of some family members to IC pts. I knew a lady who had to sue to see her grandchildren. She died before she got to see them. My only idea is that they can't imagine that we can be so sick when we look so healthy. And they blame us when we cannot fully participate in activities? I don't know.

Anyone have thoughts on this? I have tried giving them articles about IC and no change in attititude. I received more kind thoughts when I broke my arm in college. Miss my mom and dad, big time. They "got it."

Dantheman, I think of all the money wasted on things, but research $ for us, forget it. And then all the amazing technologies....surely our IC couldn't so frightfully difficult to figure out??? Help us, help us, help us, help us, help us, help us........
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summerly



Posts : 16
Join date : 2016-01-11
Location : Qld.

PostSubject: Re: I CAN'T TAKE IT ANYMORE   Sat Jul 02, 2016 7:23 pm

I am glad you are okay IC queen. I've lost some friends to various things over the years and have a tendency to be quite blunt about things now and prefer to ask straight out. This condition can be very isolating and the more we can help each other out the better.
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