IT'S OFFICIAL - I AM AN OUTCAST!

[whitedaisies]

Well, just when I think my life can't get any lower. My mother told me today that the reason my 3 beautiful children (12, 9 5) haven't been able to see their cousins is because they are scared of my virus and fear for their children! WTF! These are people who called me OCD 3 months ago for having the same thoughts. Who the fuck would punish 3 innocent children of love? THeir kids are in daycare, at school....they are exposed to that virus all the time. My family is very educated and so I thought logical people; my dad had meningitis and that is far more dangerous and deadly than what I have.

 

I am utterly disgusted in their inability to get educated as I have pointed them to this website several times and my doctor is actually my dad's best friend....it would be easy for him to ask for advice and communicate that to my family.

 

Well, it's official. I have no one. I am alone with no authentic love and support when all I have done is been loving and supportive to my family. I feel like a freak in my own illness and now in my own family. How much more can I endure?

 

I already have herpes manifesting ridiculous way in me, went thru 8 months of people calling me crazy and delusional because I couldn't get a positive result. Now the doctor is telling me he doesn't believe my negative results and that it turned positive. He said I could have been positive before and got 2 false negatives and now I suppose I ahve a false positive result. I have gone to several specialists who have also called me crazy; a gynocologist that said it was neurological and a neurologist that said it was gynaecological (the same day btw). I have an ex-lover that is calling me dramatic b/c I am struggling with a diagnosis that he knows nothing about; a have a husband that hasn't slept in the same bed as me in 5 years and has not hugged me once during this struggle. My family has isolated me and my children and I still DO NOT HAVE AN APPROPRIATE DIAGNOSIS OR HAVEN'T SEEN AN INFECTIOUS DISEASE SPECIALIST YET.

 

So I ask you, how much more can I take of this? How strong am I supposed to be? I would say the fact that I endured what I have thus far is nothing short of a miracle and is thanks to my therapist and you people on this forum. But besides that, there is no authentic relationship in my life and I am tired of it.

 

Thanks for letting me rant; I sincerely hate posting this crap b/c it's so negative but I got nowhere else to go!

[whitedaisies]

Oh, I am going to have my damn period for the week I booked on the beach!!!

[WCSDancer2010]

OK - playing devils advocate here..

 

You've had concerns about the other rash you have, asking here if you are contagious. (As per http://herpeslife.com/herpes-forum/discussion/3753/how-contagious-am-i-what-touch-is-not-risky and http://herpeslife.com/herpes-forum/discussion/3999/erythema-multiforme-from-hsv-ugh) So you had the same concerns as they have and you were pretty freaked out about the *possibility* of being contagious. So why are you surprised that they are freaked out too???

 

What I suggest is that you need to educate them with information from trusted sources. Print out this information I sent you relating to the possible Erythema multiforme (below) .... print out both my answer and the ncbi paper and give it to them.

 

1) First point is that H doesn't spread through the blood or fluids outside of the area of the initial infection (genitals or mouth)

 

2) The EM lesions are a hyper-sensitive reaction to the "viral antigen-positive cells that contain the HSV DNA polymerase gene (pol)."*** ... aka the antibodies to the virus which DO circulate through the body.

 

***http://www.ncbi.nlm.nih.gov/pubmed/22788803

 

Then print this out:

 

http://umm.edu/health/medical/altmed/condition/herpes-simplex-virus

 

and highlight this part

 

Oral herpes (cold sores)

Everyone is at risk for oral herpes from HSV-1. In fact, studies suggest that by adolescence, 62% of Americans are infected with HSV-1. By the time people are in their 60s, up to 85% have been infected.

 

Let them know their kids are being exposed to H1 EVERY DAY in school and around family (knowingly or otherwise) and that your rash is not (as pointed out in the first article) not contagious.

 

When you take this to them, don't do it as an attack. Approach it that you wish to enlighten and educate them. Imagine if you were afraid for YOUR children because you didn't know what you know now? YOU have very possibly passed this fear on to them because of YOUR fear about it. So now you need to help them to learn what you have learned here ....

 

If you go at them in hysterics it will just confirm that you are either contagious and/or crazy. You need to let go of all the upset and just let them know that you have researched this pretty thoroughly and if you were contagious, you wouldn't expose YOUR children to this, never mind THEIRS.

 

I hope you can work through this .... just remember to approach it without anger ... because it won't work if you start from that point. You were uneducated once ... so how can you be upset with them for the same ignorance???

 

(((HUGS)))

 

 

 

 

[whitedaisies]

I understand why they would be afraid of me. I get that part.

 

But to not allow my kids to visit without me there is really hideous.

 

I am too angry to educate. Yes they are likely fearful bc I told them my fears but they told me my fears were irrational and condemed me for them!!!!

 

If I am clothes from head to toe and don't kiss anyone how is that a risk?

 

How is being in the same room as someone a risk? That is ridiculous.

 

Thank u dancer for ur advice and perspective but I refuse to put up with their crap anymore. So I choose not to and whatever the consequence are I am willing to accept them.

 

Thx for the info and links

[whitedaisies]

To not want to be with my children who do not have the virus without me there is really unthinkable.

 

I don't blame them for their ignorance I blame them for wanting to stay ignorant. Here is a big difference.

[whitedaisies]

Plus my sister is a science teacher and also teaches sex Ed to her students. There is no excuse for her to be ignorant. She can do the exact same research as I did. My brother and dad are lawyers and research for a living and are also quite capable o doing research.

 

There is no excuse.

[MC0704]

Just wanted you to know, that I admire you and you're strength does not go unnoticed. Perhaps your family just needs time to adjust?

 

Life is hard; no doubt about that! Lol. But, it's good also. You have 3 beautiful children who think the world of you, so try to focus on that for now. To hell with everyone else! Lol.

 

Two weeks ago I went on a date with some guy and I disclosed that I have a hearing disability. Mind you, we had NO problems communicating and got along great. However, after the date, and after my disclosure, I have not heard a single word from him. Haha. Could it have been my hearing disability that turned him off; sure. Or, I suppose it could have been a number of other things, as well. The point I'm trying to make, I guess, is that the people who really see us for how wonderful we are, are those who will stick around. I have so many friends who don't even see my hearing disability anymore and they love me simply because I am me. The folks on this forum and your children admire and love you for who you are! Like I said, maybe in time, things will change with your family.

 

I'm not saying I have it all figured out; I certainly do not! But, reading your posts and the others on this forum has kept me going during this hard time for me. So, you are not an outcast! You're awesome.

 

Hang in there and I'm thinking of you.