Hi everyone.
OK, I'm just feeling a little picked on here. That thread about the MDA clinics got me hopeful that when they finally got my clinic scheduled it would be a good thorough going over. My doc sent orders for a neuromuscular clinic and SFEMG. Here's how it's going so far.
4/3 - Lot's of blood work that I knew would take some time, but geez! As of Friday, there's still one test out there SOMEWHERE that they are trying to track down so I know nothing yet. (Reminds me of my first anti-body test that got lost, and HEY - I just figured out that that fool neuro had the test redone AFTER I was on Mestinon for 3 weeks!)
4/6 - orders first faxed over.
4/9 - I called to see if we could schedule - they don't have the fax
I call neuro's office - they refax
4/10 - I call to see if we can schedule - recept says they have fax, but
scheduling says they don't. It's "in transit"
4/13 - I call to see if fax has made it to scheduling - get transferred to
the duty nurse and have to leave a voice mail.
4/15 - no call from nurse - call again - leave another voice mail
4/16 - call neuro's office to get help from their end - leave a vm
4/17 - call neuro's office - my doc & her nurse are out
4/20 - duty nurse calls - explains they have lost both faxes somehow and
she will call neuro's office to babysit it through (YAY!) Says I
should be called by scheduling within 2 days
- neuro's office calls to say they connected and it should be rolling
4/23 - called scheduling, had to leave a vm
4/24 - scheduling calls - I'm set for 5/27 appointment (YAY!), but the
appointment is only for a one hour consult - they won't schedule
the SFEMG my doc ordered until/unless the consulting neuro thinks
we need it done (UMPF!)
4/24 - called neuro to tell her they aren't following her orders and see
how she wants to handle that. She's at the hospital, so nurse
will let her know, but she thinks we'll do it MDA's way (UMPF
again!)
Everything seems to go like this! I understand the MDA neuro will want to do an exam and take a history, but if my doc wants the SFEMG, what's the hold up? IF the MDA neuro wants it, she only does them every other Tues. I'm told, so it will be at least one more week, maybe two.
Lord, I've got a job I'm unable to physically go to. They've been great to let me do what I can from here, but given that I supervise a department there's a whole chunk of my job I can't do from here. I don't know how long my boss can carry on with no clue as to when I might be back, if I'll be able to come back, if I'm gonna drop dead, or what.
The economy is so uncertain now and he's already freaked about the drop in sales and antsy about a possible need to lay people off. If he were like most owners he would have told me he needs to let me go and get someone that can be there to help by now!
I know too that that visit probably isn't gonna give me any answers - just a list of more tests to be done and scheduled one little bit at a time so they can see results before the next one - with varying periods of time to be wasted before I can be fit in......
In my mind I keep hearing "tick tick tick". It's been since the end of January that this bout hit me, it's gonna be at least the end of May before I have the first round of tests (except the lost bloodwork) done, then on to who knows???? To make my frustration level even higher - I've been through this twice before! I got a dx on one thing and no answer on the other - who knows at this point! Maybe it's really all just one thing rolled together!
On the one hand I hope it all just resolves to a point where I can function again so I can get on with my life - forget the dx.
But on the other, I know it's just gonna happen again. Maybe if I get the dx this time I won't have to go through all this frustration as well as the effects of the illness, conditions...
I'm about on my last nerve as they say, and trying hard not to lose it.
AND, I have a new worry to add. My husband. His brain injury of last year isn't all the way healed and he is starting to show signs that all this stress may be aggravating that. He was so depressed at one point that he spent 3 days straight pretty much sitting in a chair. No appetite, no energy. His memory is slipping again, and his eyes look funny to me. I told him he needs to go to the doctor and tell them what's going on and get something for depression, but he got upset that I think he needs help. Irrational behavior can be a part of TBI, and although that hasn't been a big problem with him (thank God) there are some subtle signs. I've posted on the TBI forum, looking for some direction from those with that experience so hopefully...
I just don't have the strength - physically, emotionally, or mentally, right now to even take care of myself! I don't know how much I can possibly do to help him through this too.
I thought I might run away to my Mommy's
for awhile, but 1) I can't monitor him, 2) I think that would hurt him to think I don't think he can take care of me (I did this once on my first bout and he was very hurt), and 3) I can't work there - no fax, internet access, printer, etc. - so we'd have even less money coming in and I think it would jepardize my job even more.
UUUGGGGHHHH! I just can't see how to deal with all this!
Sorry for the dumping, but obviously I can't talk to him about this. I need to go sit in a bar - not to drink - just to use the bartender for a phsychiatrist like you see on tv!
Talk to you all later, and I'll get back to my old self before I post again. Thanks for letting me unload a little.