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The Naive Amongst Us . . .

 
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Robin Smith



Joined: 28 Dec 2004
Posts: 349
Location: San Diego

PostPosted: Mon Dec 10, 2012 7:06 pm    Post subject: The Naive Amongst Us . . . Reply with quote

Sometimes people say silly things to us. They tell us that it's no big deal, or that it's all in our heads. Maybe they think we should just get over ourselves' and cope (like everyone else).

Well, we're barking up the wrong tree if we think that we will be able to enlighten them in a single conversation. I think that I've learned something important through all of it: We're not victims and we're not heroes. We're just doin' the best that we can to strive through the struggles that have been laid before us (like everyone else).

Maybe I'm a little bit introspective tonight as I continue to search for meaning to my struggles. I'm goin' in to the hospital for my brain (amphotericin) injection tomorrow and as always, I'm feelin' the dread and anticipating the pain.

Gotta remember how far I've come, (talk to you next week).

Love,
Robin
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kat



Joined: 30 Dec 2004
Posts: 912
Location: Creswell, Or

PostPosted: Tue Dec 11, 2012 8:05 am    Post subject: Reply with quote

Robin, I can always tell from your posts when you are going through your treatments. You are amazing with your insights and inspiration. I can only imagine what it takes to build yourself up positively before going through them. My thoughts and prayers are with you, my friend.
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God Bless you and keep you,
Kathy
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fuegoray



Joined: 04 Aug 2012
Posts: 34
Location: Paso Robles

PostPosted: Fri Jan 25, 2013 9:40 am    Post subject: Reply with quote

Hi Robin,

My husband has had VF and spinal meningitis for 9 years now. The infection is in his brain. I see where you are going for amphB injections. The ID doctors are wanting to try this on my husband, into his skull and they say he will have the weekly injections for over a year. If this is the treatment you are having we would like to discuss this procedure with you further.

Also, we are working with CA Senators to pass a new law in regards to educating doctors about VF in CA. If you are willing we would like to get your story on how you contracted VF.

Hope you are well, Sincerely,
Todd and Tammy
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kat



Joined: 30 Dec 2004
Posts: 912
Location: Creswell, Or

PostPosted: Fri Jan 25, 2013 10:26 am    Post subject: Reply with quote

Todd and Tammy,

While you are waiting for Robin to respond to your post you can read his story by going to his profile, click 'find all posts', go to page 24 and choose 'Valley Fever Blows' in the Personal Stories forum. This is definately not the end of his story...only the beginning. He has been such an inspiration to so many people. I have been blessed to have him for a friend on this message board.
I will pray for you, Todd, that God will guide you in your decision and that the doctors will choose the right treatment plan for you.
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God Bless you and keep you,
Kathy
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fuegoray



Joined: 04 Aug 2012
Posts: 34
Location: Paso Robles

PostPosted: Fri Jan 25, 2013 11:46 am    Post subject: Reply with quote

Thank you Kat for the information. All of your stories are so intriguing, and we understand the battles we all face. That is why we are pushing for new legislation in whatever means we can obtain.
Thanks,
Tammy
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Robin Smith



Joined: 28 Dec 2004
Posts: 349
Location: San Diego

PostPosted: Sat Jan 26, 2013 3:45 pm    Post subject: Intrathecal Amphotericin Reply with quote

Hello Todd and Tammy,

I will be happy to share my experiences with you. Have you had the chance to read 'My Valley Fever History'? It's posted on this website and might be a good place for us to start.

Thanks,
Robin
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fuegoray



Joined: 04 Aug 2012
Posts: 34
Location: Paso Robles

PostPosted: Fri Feb 01, 2013 11:12 am    Post subject: Reply with quote

HI Robin,

I read your story and passed it along to the legislative personal that is proposing this new law for CA. We would like to talk with you more about your personal story of being mis-diagnosed primarily and the result. We look forward to hearing from you, things are moving in the right direction of continuing education requirements for practicing physicians in CA.
Todd and Tammy
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Robin Smith



Joined: 28 Dec 2004
Posts: 349
Location: San Diego

PostPosted: Fri Feb 01, 2013 11:28 pm    Post subject: Reply with quote

Tammy and Todd,

I'll be happy to. The exchange of email addresses and phone numbers is possible on the Facebook version of VF Survivor via private messaging.

Thanks
Robin
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k_dehesa



Joined: 07 Aug 2010
Posts: 27
Location: so cal

PostPosted: Sat Feb 02, 2013 12:33 am    Post subject: Reply with quote

robin smith god bless u keep fighting youre in my prayers
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I appreciate every member on this forum, stay strong we're in this together.
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k_dehesa



Joined: 07 Aug 2010
Posts: 27
Location: so cal

PostPosted: Sat Feb 02, 2013 12:39 am    Post subject: Reply with quote

Todd and Tammy,
what medication is he on? did the medication fail?
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I appreciate every member on this forum, stay strong we're in this together.
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fuegoray



Joined: 04 Aug 2012
Posts: 34
Location: Paso Robles

PostPosted: Sat Feb 02, 2013 9:48 am    Post subject: Reply with quote

HI Robin,

I will look up the information and be in touch with you, Thanks!!

Hi K-dehesa,

Todd takes 800 mg of Diflucan for 9 years now. The doctors believe that the infection is so severe in his brain that the Diflucan is not breaking the blood brain barrier and being effective. The Dr.'s suggested trying ampB shots into the brain to reach the infection more effectively. We wanted to hear from other people that have had this procedure done. Hope you are well! TNT
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Robin Smith



Joined: 28 Dec 2004
Posts: 349
Location: San Diego

PostPosted: Sat Feb 02, 2013 9:54 am    Post subject: Facebook Reply with quote

Todd and Tammy,

I'm listed on Facebook as 'Robin Blake Smith'
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