confusion

[Guest guest]

I'm still going through old messages (down to 337 now from 1400!) and I'm confused about this little thread. Hopefully you guys can clarify for me. said: my 4th ventricle is closing. Can you say coma?

Then Tracie said: I'm at a place where 3 of 4 ventricles are failing.

I know that Tracie means heart ventricles. , are you talking about brain ventricles?

Thank you for assisting an old lady. (Hey, when I was 15, 61 seemed awfully old!

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: beautybarnweber@...Date: Fri, 25 Sep 2009 05:10:32 -0700Subject: Re: AN APOLOGY IF I SOUNDED FLIPPANT

first of all i want to give (((((((hugs)))))))) to jackie and anyone else that needs it ! tracie i will be 39 on october 2 nd and i am not able to drive. i have not been allowed for a year now due to the neuro part ! so if my parents call me and ask me to go to breakfast , i am sitting at the drooling like pavlovs dog just to get out of the house , even for a half hour.

my latest update is i am trying to get my infusions in wny now , the trip to cleveland once a month is getting pricey. my doctors think i have hemi-dystonia allthough now it seems to be both sides of my body. does anyone notice when they yawn or are breathless that their bodies are trying to collapse? for example i get hand clubbing , and there are times that i jump like i was hooked up to a 220 voltage line. i was one of the lucky ones to not have much pain, but now i am getting ALOT of muscle and joint pain that wakes me up at night ! new night sweats now too !

well i hope everyone is feeling better, jackie please dont leave us , we need you girl ! well i am getting stupid hand cramps so PLEASE EVERYONE TAKE CARE AND HAVE A BLESSED DAY ! LOVE YOUR SARC SISTER AND YOUR SISTER IN CHRIST ~~~~~BARB

To: Neurosarcoidosis Sent: Friday, September 25, 2009 2:47:08 AMSubject: Re: AN APOLOGY IF I SOUNDED FLIPPANT

Wow! There are so many aspects and issues for all of us, isn't there. I would so hate it if I get to a place where I can't drive. We live in a rural community where the buslines are vans. But hey, you can catch one a couple of times a day (6 and 7 am, 3 & 4 pm-- and if that doesn't work for you-- oh well. So you either talk your employer into letting you work an early shift and pray you don't have overtime-- or you miss the bus home. It's not a perfect system..

You know, I find myself getting so excited (wound up) over having to get out and shop or take care of business-- (I had to go for blood work a couple of days back) and there were so many people at the draw station with coughs and hacking-- and I'm thinking, damn, if I'm not already sick with something, I will be by the time I get outta here.

I know that desire to make sure that I live each day to the fullest (after a 14 hr sleep-in) so that I don't lose what little bit of automony that I have left. I do understand that part.

I'm at a place where 3 of 4 ventricles are failing, and we can't do surgery because my lungs and heart are now too compromised- - and transplants are a choice I don't want. Sarc has a tendency to come back in the transplant-- especially when it is already systemic.

Make sure you keep any wound well covered and clean, so that you don't spread the staph-- and stay away from people that you know are susceptible.

I don't think you sounded flipant, not at all-- I'm in that last couple of days before my Remicade infusion-- and part of why I took time away is that I seem to be over-reacting- - to everything. Hell, I need to put myself away in a closet and not come out until next week, when my reactions calm down. (not possible, but a great idea)

You know that Humira and Enbrel are alternatives to Remicade if the insurance balks at the Remicade idea. That may be something to consider since the Cytoxan is no longer helping.

Best wishes,

Tracie

NS Co-owner/moderator

From: <grannylunatic@ yahoo.com>To: Neurosarcoidosis@ yahoogroups. comSent: Thursday, September 24, 2009 11:11:02 PMSubject: AN APOLOGY IF I SOUNDED FLIPPANT

Tracie

Neither my daughter nor myself can drive. I had to bus all the way back almost to my apartment and transfer to another bus when it was due. I shopped before the other bus arrived and it was well past time to eat. I'm not being as irresponsible as it sounds but I have been told the Cytoxin is not working and my 4th ventricle is closing. Can you say coma? Sure you can! (in my best imitation of Mr. Rodgers) I am going to take care of myself as best I can but I'm going to enjoy what life I have left. I'll take all the prayers I can get. I pray for everyone in the group. I appreciate all the medical articles and info that you work so hard to get for us even though you aren't well yourself. I enjoy the feeling of belonging. Join our Sock Challenge for Orphans in Kazakhstan http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@ yahoo.com

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