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 Life is hard!

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Aliviamom11
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PostSubject: Life is hard!    Sun Nov 04, 2012 5:11 am

Hey guys and dolls,
I haven't been on in a while. My partner of 6 years left me. I haven't been dealing well with life. Its getting hard to deal with this disease and care for my 16 month old. I'm thankful for my family. My dr won't do surgery cause my daughter is young. Met someone new but scaredto get close. My etes hurt bye. Find me on twitter facebook and Instagram.
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Heidi
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PostSubject: Re: Life is hard!    Sun Nov 04, 2012 3:11 pm

I totally understand where you're at. I became a single parent, when I divorced my daughter was 2 and a half years old by then I'd had IIH for 3 years. I met someone new when she was 4 which lasted for 4 years and I played it ver casually for the first year, and let him be the one to insist on being more serious, as I was very guarded for myself and my daughter. My second husband I met 6 months after that relationship ended, and we were married 2 years when I had to have my first shunt and became partially sighted and disabled. We have been married for 15 years.

My point is, NOT to give up hope of a happy life with someone, but to go into this relationship on your terms. Enjoy the relationship for what it is and go at a steady but enjoyable pace. Your daughter will always be your priority, but you also need human contact and interaction. If you haven't informed him yet about your condition, tell him when you feel comfortable to do so. Read our booklet on Informing People about Your Condition.

We are all here for you and will give you the support and benefit of our experiences.

Heidi xxx
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Aliviamom11
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PostSubject: Re: Life is hard!    Mon Nov 05, 2012 2:02 am

Thanks Heidi. I have informed him and showed him the website. Today i went to ER and he was more understanding after seeing firsthand. We are taking it slow. My daughterfinally warmed upto him after 9 weeks. I've known him all my life we grew up together.


marlana
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Heidi
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PostSubject: Re: Life is hard!    Mon Nov 05, 2012 10:00 pm

I am so pleased for you hug it's time you had some joy in your life besides your daughter. Very Happy
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sammyjo
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PostSubject: Re: Life is hard!    Tue Nov 06, 2012 2:00 am

i totaly get where u r comming from have had iih for ten years i met my mr mr 3 yrs ago b4 anything happened i told hi, "befor we fall in love or attempt to make a life to gether i am sick and there isnt a cure only slight preventatives but i manage my pain well" i then went into detail about IIH.
recently my pain has became so bad and in and out of hospitail so much that i lost my job and my doctor advised i not try to find another job untill next year as my surgry is in december. he has become angry and annoyed and impatient and has even said the words FACKER as he dosent get y if i am in pain how i can still smile. i try to explain that i refuse to let the pain and IIH rule my life. i can feel myself loosing him all because of this god damn deasease, it has taken my life my sight my hearing my sanity and now feels like it is taking my love
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PostSubject: Re: Life is hard!    Tue Nov 06, 2012 3:17 am

Oh my. This is so unfair.
I will keep you in my thoughts and prayers.
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Sophiasmom
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PostSubject: Re: Life is hard!    Tue Nov 06, 2012 4:16 pm

I suppose it is a blessing that my sensory disorder symptoms are so bad that I just want to be alone. yes, I lost my relationship too, in part because of this illness. the emotional abuse was so bad that I just don't want to be with anyone anymore. I don't need to sign up for someone who is just going to abandon me when the going gets rough. men can't handle it. (and because no one understands this disability I feel like I get abused on a daily basis by how people trivialize my brain problem. I don't really have much interest in interacting with people who don't get it.)
good luck Aliviamom, I hope it all works out for you.
Deb
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Aliviamom11
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PostSubject: Re: Life is hard!    Fri Nov 09, 2012 4:07 am

Thanks gals, i haven't been i got admitted to tge hospital :ill this weekend..got out tuesday and have been recovering..my dad took the week off to help with Alivia. Im always nervous about my neuro appointments..its tuesday the 13...i need a med change she won't do surgery into Alivia is at least 3. censored


marlana
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Sophiasmom
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PostSubject: Re: Life is hard!    Fri Nov 09, 2012 5:18 am

if I were you I'd get a second opinion. you have family to help care for your daughter. a decision about a shunt should be based on your medical condition, not on your family situation. I mean, she shouldn't take that decision away from you if it is otherwise appropriate. I think you can get a long distance phone consult from Johns Hopkins, and that may help guide your local neuro. I used to live in the South and the medical care left much to be desired.
Deb
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medmisfit
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PostSubject: Re: Life is hard!    Fri Nov 09, 2012 3:01 pm

Sorry to hear you're struggling so much right now! Have they told you why they want you to wait? I agree w/ Deb and would get a second opinion if meds aren't working and there's no medical basis for waiting. Your daughter is aware when you're suffering, so there's no sense in putting you both through the stress. At least recovery from shunt surgery is temporary..by not treating your IIH they're just dragging it all out. If you take care of yourself, then you'll be able to better care for your daughter..I just don't understand their reasoning, so I can only imagine your frustration. Hang in there!!!
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Aliviamom11
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PostSubject: Re: Life is hard!    Fri Nov 09, 2012 7:05 pm

Well Ladies, she wont give a reason. I go tuesday if i dont like what she has to say i am looking into other doctors in the California and ohio area where i have family..when she did my lp i was 31 when first diagnosed then in april 50 and July while taking diamox i was 25...i am bringing my mom she tends to get things done. fingers crossed


marlana
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medmisfit
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PostSubject: Re: Life is hard!    Tue Nov 13, 2012 7:26 pm

I hope your appointment goes well, but let me know if you decide to come to Ohio..I have a couple names for you. Keep us posted!
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