Re: Barb-TIA CVA

[Guest guest]

Barb,

I am so sorry that all this is happening. It is so very difficult when the people we have to depend on are clueless.

The signs as you know-- are so very classic of neurosarcoidosis and Transient Ischemic Attacks. Sadly, I suspect the ER bozo's didn't check you to see if you are having TIA's or CVA's. (strokes-cerebral vascular accidents)

I do so very understand the frustration of the legs giving out. Although mine have not totally collapsed, I'm no longer confident that they won't.

I was just talking to , and had told him I wanted him to drop me off at the top of the bike path that goes thru town--- and then meet me at the bottom of the path (it's an old railroad grade that is a steady 3% grade downhill.) He reminded me that I have no sense of balance, so to be on anything other than a stationery bike is not the best choice for me. Reality is I've only been able to ride a new, beautiful bike 3x in the last 2 yrs-- and I need to give it away, as it's not going to be available to me. Damn.

I also know it is an insult to all of us, you are giving up your home- I'm losing a bike-- and I am so sorry for both of us.

Loss is loss. It doesn't matter how big or small- they all come with a sense of grief and sorrow.

and I are truly thinking of selling our home, and renting a small cabin house up on the property where he cuts firewood.( It's the old ancient apple orchard I've spoken of.) It is beautiful there, and I could be watching my deer and the bears and the quail full-time, as well as save about $1500 a month less than what we're paying now. Hmmm)

Back to you, can your MD call the ER doc and ream them new assholes. You are so very ill, and it's not mental- or psychotic. I'll try to find a decent link for you that will explain the progression of NS- so that you can take it into these bozos and beat them with it. (Or your husband can read it to them so that when you go in the next time- they might have a clue.)

I know your kids don't want you to have to give up your home. Even tho they'll not "get it"-- you have to take care of you first.

Also, thank you for sharing your special place with all of us- the generosity, and love of this entire group is so very comforting.

With compassion,

Tracie

NS co-owner/moderator

[Guest guest]

Tracie,

I am sorry. It is really not like me to go off like that, Usually I can deal with what is happening. I have an exceptionally hard time though with my nursing knowledge. I was a damned good nurse for forty years and now if i can draw a tiny thread of what I knew I am lucky. It is all gone.

Barb,

You don't owe any an apology. This part of this disease is so very emotionally painful.

To not be able to function like we did-- to be losing more and more each day-- on a good day we'd say it's humbling. On a bad day we scream obscenities that will be corrected by our insensitive family that can't understand the frustrations.

This group is a place where we can celebrate the good days-- and scream on the bad ones.

Our stories are the same, the players are a bit different. It's that similarity that allows us to reach out to each other.

And know that when we "lose it" that someone else may be having a good enough day to "find it." :-).

Hugs,

Tracie

NS co-owner/moderator