The journey to certainty

[whitedaisies]

Well, I am eating through a bowl of Halloween candy and thinking to myself how different I was this time last year.

 

Last year I was happy, exploring my sexuality and enjoyin it finally, the happiest I had been in my whole life. I was a better mother, friend, employee and a better ME! What a difference a year can make. I am mourning the loss of happy me.

 

How did things turn so quickly....lost a lover and a friend, lost other friends and family members, lost my spirit.

 

I have been on this diagnosis quest for 10 months - full of ambiguity, frustration, knowledge, physical and emotional pain, and sometimes connection with some nice people on this forum.

 

You would think after all this I would want this journey to end, to finally find out if I have herpes or not as that has been my sole purpose these 10 months to prove whether or not I have it. With conflicting blood tests and no positive swabs.....why don't I just get the western blot which will likely put the ambiguity to rest?

 

I am petrified for certainty! Living this journey is all I know now. I really don't know how to live any other way. My quest has been certainty and now I am at the end of the road, and am faces with it.....I am fearful. Not as much fearful of herpes as I have been living like I have had it for 10 months BUT fearful of life after a certain diagnosis. I will be forced to fce many other things in my life that are far more difficult to deal with and change than a lifetime std.

 

In addition, this test is only offered in USA not Canada so I have to make a special trip to go. Leave my kids again, my family, for this last step. I don't want anyone coming with me BUT I don't want to go alone.

 

I don't like being weak....I hate it.....I don't like doubt.....despise it.....yet I choose to live like that for fear of facing my real obstacles.

 

I am stuck...I can't move forward. I hate that I am smarte than most of the doctors I see or demand follow up for inaccurate or misinformed diagnosis. I hate thy so many people out there struggle like me with a herpes diagnosis. Why is this so fucking difficult? Why is this journey so inhumane?

 

I am weak, I am afraid, I am tired, I am not hopeful. I am unhappy. I am someone who gives great advice but can't take her own, a hypocrite, I am self loathing. I am comforted by this as this is what I have grown to know. Change is scary even if it may be for the better.

[WCSDancer2010]

Not going to make any statements of how you *should* be or *where* you should be... because I think you really are very close to a huge breakthrough. I can feel it coming. Keep working and writing friend! We are here for your transformation and growth into a YOU that will be far more amazing that you can begin to imagine right now :)

 

(((HUGS)))

[whitedaisies]

Kisses Dancer as you have been amazing to me!!!!

[Theo1824]

Change is scary. My waiting game hasn't been anywhere near as long as yours, but just the confirmation has given me this..peace. As we say at my job "it is what it is." It might be scary to leave family for a test, but once you know for sure you can really start putting life back to normal again. I feel for you! I would be feeling the same way in your position

[whitedaisies]

N

[WCSDancer2010]

Keep going! Keep Going! Keep going!!!

 

 

[whitedaisies]

Left a message with university of Washington virology to discuss my conflicting results and have a phone call consult ,Monday with dr Lisa tallbee. Looks like western blot should be done soon. Going back to North Carolina to do it likely as I have friends there now to host me. Moving forward.

[whitedaisies]

University of Washington said they hear about weird herpes symptoms all the time and it is possible my symptoms are related to herpes. She recommended westover heights as well and also suggested I do daily swabbing as I believe they have a kit so I can document symptoms and swab results so at least I will hopefully realize I am not contagious all the time. She also suggested to find a research group in my area who would be happy to test me as I am atypical if positive. She also suggested mono that I had could be causing cross reactivity with the herpes antibody proteins.

 

So I still think I have it....it's not proven yet, but at least with daily swab I will have a better idea when I am contagious/if I am and that helps give me peace of mind.

[WCSDancer2010]

That's great - if *anyone* can help you, U of Washington and WH are the best bets...

 

(((HUGS)))

[whitedaisies]

I can't believe this is almost a year of my life!

 

Infectious disease specialist next Monday so we will see what he says

 

 

[whitedaisies]

Well I should have my western blot results by the end of this week. I hate all this waiting. You think I would be used to it now with all the tests I have done.

 

 

[whitedaisies]

Positive hsv1 western blot

[Sil88]

Congrats, one less thing to worry about! And it's the type that puts less risk on your partner. With the neuralgic pains I was getting all over my body, I was massively relieved to confirm I had hsv2 and not something more life changing. All is well! Or if you don't agree you can at least try to trick your brain into thinking so.

[whitedaisies]

I can't imagine I am less risky. I still have a hard time with that.

 

Maybe I just have to find someone with ghsv1 like me. Really struggling with the whole contagious factor as I do not get lesions struggling to know when I am contagious.

 

Hormones are ready but emotionally I am still stuck...can't even imagine disclosure or sex in the near or distant future. Guess I am taking next step on healing journey.

 

[whitedaisies]

Nerve pain all over is likely post viral syndrome which is similar to chronic fatigue (that's what I had/have....it was horrible). It can also be ur body's reaction I.e. Ur immune system responding to the virus. I hope it has settled with you and you are doing better.

 

Mine took a whole year to settle and I still have fatigue.

 

Thank u for responding to my post. Hugs to you.

[Sil88]

Yes I had serious fatigue but only for a few days. It was enough for me to understand how you must feel though. So it's getting better now?

 

I don't think you should only get with h+ guys, we just have to be more awesome in more important areas, that includes not letting it drag us down. And hell, gotta love the challenge of it!

 

Hsv 1 intends to affect the mouth, I think we can be sure of the slightly lower risk factor. Especially with no outbreaks!

[whitedaisies]

Yes it's getting better thank you. Physically I am a lot better emotionally I am still struggling.

 

It's a process....Christmas and New Years will be my first anniversary. Holidays will be different this year.

 

Hormones are ready but emotionally I am nowhere near ready to meet someone.

 

I hope having no typical lesions means I have less of a viral load. I am having west over heights send me pcr swabs so I can swab myself and send it to them to process.