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julielarson
Posted: Friday, January 13, 2017 9:21 AM
Joined: 9/30/2015
Posts: 1155


I looked over my list of things to bring up to the doctor on Monday and I think to myself. Why did I write all of this down? What is the point and What could it mean? Then I go and look up online what BVFTD and it all comes back to me.
grandmalynda
Posted: Friday, January 13, 2017 10:21 AM
Joined: 12/3/2016
Posts: 374


I know it's frustrating Julie but just know that you are advocating for yourself the best that you can.  Your list and all of your other preparations will hopefully get at least some of the answers you are seeking.

We all know how frustrating Drs. can be, but that doesn't mean we quit trying to get the answers we deserve.

If you can find someone who is willing to dig in and help you then it will be worth the aggravation.

I know this isn't much help but I just want to let you know that I am concerned and wish the very best to you.

(((HUGS)))

--Lynda


julielarson
Posted: Friday, January 13, 2017 10:30 AM
Joined: 9/30/2015
Posts: 1155


Thank you Lynda, I appreciate your kind words.. I am armed with information and I am going in on Monday and I will be accepting of what he has to say..
lisabramey
Posted: Friday, January 13, 2017 4:39 PM
Joined: 3/20/2015
Posts: 96


DEAR JULIE,

I'm proud of continued efforts in self advocacy. I'm sure it can get tough but you seem to be handling it like a trooper. YOU GO GIRL!!!!!

Lisa Ramey


julielarson
Posted: Friday, January 13, 2017 5:14 PM
Joined: 9/30/2015
Posts: 1155


Thank you Lisa it means a lot to have someone say that to me.
The_Sun_Still_Rises
Posted: Saturday, January 14, 2017 12:40 AM
Joined: 7/24/2015
Posts: 3020


You can only do what you can do with what you have....and at the end of the day, you could do no more if you tried. 

There a poem I printed out and laminated long go, I keep on my blanket....so I have handle it when I go bed, and when I put my blanket away.   It help me a lot in trying make my diminishing skill set be ok my type a brain....maybe it help you also:

"Courage does no always roar.  Sometimes, courage is the quiet voice at the end of the day saying, "I will try gain morrow."

I made that when life was really hard me...really really hard me...and I had no idea how I was going carry on.  I longed for the kind of help my neighbor with breast cancer had.  I longed for the kind of supportive family others have.  I longed for my friends back in California.  And I longed be the kind of person that could tell someone I needed help.  I was so alone...and I was really hurting. 

So I became my own caring friend....and I took care my sick body, and I walked beside my leg dragging, walker wielding, dystonia undulating body....and I encouraged myself on.   And I whispered those words aloud myself each night...."courage is, I will try again morrow." 

It got me through.  And no being one mess with what works....I still whisper that aloud morning and night.  Although sometimes I only manage one word now. 

Try envision a wonderful doctor appointment.  Try envision the whole thing go the way you want it go. 

All any us can do is the best we can do.  Show up, present you list, say all you need be....if the appointment go south it will no be because of you. 

<3

 


julielarson
Posted: Saturday, January 14, 2017 9:05 AM
Joined: 9/30/2015
Posts: 1155


Thank you Sun,, yes I will give it my best and the outcome may or may not be what I want but that will not be because of me..