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Member
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Join Date: Jan 2008
Location: Southern California
Posts: 308
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Member
Join Date: Jan 2008
Location: Southern California
Posts: 308
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:( Can't handle living in more limbo
Joelle - I hope you get it worked out soon. I don't have anything overly nice to say about the TOUCH case managers. Sorry.
Barb - I hope it passes - that it was transient antibodies (don't know the right language here)....but that it will work out well. I can imagine how you must be feeling right now.
Well, I wish I had good news to report - but I don't. Again i had another day of crying and just being so upset that I could barely function. Oh, and add an anxiety attack on top of that, too.
So, I called the infusion center to confirm my appt for Tuesday morning - to make sure they will have meds, have all my paperwork, etc. The receptionist tells me that I'm only scheduled for the consult - not the infusion. I was like oh no - no way - I was told the infusion would happen...I've rescheduled my entire week, etc. She told me it was "up to the doctor's discretion" - so when I asked her how often does it happen - she said she's never seen it happen (consult and infusion the same day). I about lost it.
This of course all happened on my way to my therapist's office. LOL. I cried - but mainly I was in a silent temper tantrum I guess. Just tears falling - she kept trying to get me to acknowledge that we don't know yet whether or not it is going to not happen on Tuesday, etc.
I didn't realize it until a little while ago - but that's the thing about this - there is SOOOOOOO much that we don't know - I don't know how the disease is going to progress, I don't even know in the morning if I'll be able to walk or remember my cat's name! So this - this is something we CAN know and SHOULD know - why is it so difficult? My anxiety has been out of control - I can't just "wait and find out" - though apparently I have no choice in the matter. I think it is VERY cruel to not just give me a definite. I even asked what if I don't do it that day - then when is next avail appt - and they couldn't tell me that either.
I contacted my case mgr at TOUCH. He called the infusion people - he knows them well there - and was told by the office mgr that there are chairs available for an infusion that day for me - and that that's the reason they have me an 8:30am consult - so that if the doctor okay it - I can have it that day. Supposedly I'm pencilled in for one of those chairs. Of course, I say supposedly b/c I don't trust a thing anymore.
I'm so wiped out. Been in this exacerbation for 3 months now...dx a little less than 3 months now. I have a lifetime of question marks and unknowns in front of me.... this stuff (scheduling, etc.) should not be one of them. I've jumped through every hoop - why can't I have the meds already?!
I asked what exactly would make the doc say I couldn't do it that day - and they couldnt tell me - just that it was his discretion.
I'm very angry, hurt, upset, sad, and frustrated right now. I'm actually also petrified to go on this medication - yet I've been begging for it - and I've been mentally preparing myself for it to happen on Tuesday. But now what?!
Sorry to rant.  I'm besides myself...
~Keri
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