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Can someone please take me off hold already? This muzak sucks!!

Silvermoon

Moderator
13 more sleeps until the next doctors/surgeon appt... at which time I will wait again for whatever decision we decide to come to fruition.... I feel like I am dingbat...sitting on hold with some goofus on the other line playing really bad muzak... and I have better things I could be doing!!

It shows me, though, how spoiled I have been in my life with this disease... as I have never had to wait like this before. I got sick, my doctor admitted me to hospital, and either did surgery, or did course of antibiotics... we KNEW what was going on... and just did it....

So this waiting game is new for me.... and I know have such a deeper appreciation for all you out there who have been on hold for soooooooo long! It sucks! And I feel so bad for you... :( :( How do you do it? I think a lot of you are may of way stronger stuff than I ever thought of... 'cause I don't think I could do this for that long.

You guys amaze me. Dammit I need to find that magic wand... I need to find answers for y'all... cause seriously, this being-on-hold-muzak just sucks!!!!

So today I am sending huge hugs out to all of you... it's not a hell of a lot, but it is the best I can do for now..........


:rosette2: :ghug: :ghug: :ghug: :rosette2:
 

Cat-a-Tonic

Super Moderator
Silver, I feel for you. As you know I've been undiagnosed for nearly a year now. I've had to wait weeks and sometimes months for doctor's appointments and tests, and I'm still waiting for answers. Right now, it's 9 more days until my pill cam and then MAYBE I'll finally get diagnosed. But if not, I will still be "on hold" listening to the awful music like you are. And at least until I get the pill cam results, I'm definitely on hold. My life has been on hold for a year.

How do I do it? I don't really have a choice, for one thing. There is no alternative to being ill. I've been fighting for answers since October 2009 and I still have none and I'm still sick. It can be incredibly frustrating and depressing and I have to try to stay as upbeat and optimistic as I can be. I know that someday I will have answers. I just don't know when that day will come. Sometimes it feels like it's a looooooong way off.

And honestly, I don't know how YOU do it - it sounds so challenging and exhausting to be a nurse, especially when you are ill. I work a desk job, so I am sitting all day, but I am still exhausted at the end of most days. I have a bathroom that is essentially "mine" since I am the only female on this floor, and there is also a cot I can lay down on during the work day in case I am feeling extra ill. And it's still hard to get through a work day! So I am in awe of you, too. :)
 

Jennifer

Adminstrator
Staff member
Location
SLO
Back when I was a kid and being diagnosed Silver I had everything taken care of handled instantly and it was that way for a while. If I needed a doc, I saw them and usually that same day (be it a GI or a GP). Now I'm not on ANY meds for Crohns because I hit a snag with my insurance and I stopped seeing the best GI doc in the world because I moved to go to college. Three years later and I'm still trying to find a good GI doc and start taking meds again. I have a GP appointment today to get a referral to a GI doc in the area that accepts my insurance and who knows how long it will take to get an appointment with the GI? All we can do is go to the ER when we need to and sit and wait while we manage our pain or other symptoms on our own. I think that that's why the ER has become a second home for a lot of us. Welcome to out crappy club. :p I'm sorry you had to join or that we have to have this club in the first place really.
 

Silvermoon

Moderator
Cat: You were actually one of the first people I thought of when I was having my "little pity party" lol (I know there are more of you out there, but I have "steroid brain" and I couldn't think of you all, so I didn't want to single anyone out...lol :redface: ). Exactly! Especially those of you undiagnosed... I truly have a new and deeper respect (not that I didn't before...it is just way more profound now) for all the mental torture you are going through! Physical pain we can kinda deal with... we know we CAN get a pain pill if we want/need it (sometimes)... but this whole waiting thing... Gosh... I just feel so bad for all of you..... :(

And Crabby: YES! When I was a kid, everyone else just took care of me, including my doc! I'd literally phone her and say "I hurt" and BAM! something was done. Now I am a "big girl" and gotta deal it with it on my own and sometimes I can't find my "big girl" panties to put on to help me!! LOL!

You know what awes me even more? I am a health care professional...so I KNOW the ins and outs of the particular system I deal with.... how the hell do people deal with it when they don't know?!?!? This club sucks!! LOL!

BUT, now that I am in it, like I say, I have a way better understanding of the torture you guys go through, so I am serious when I say, if there is ever ANYTHING I might be able to help people with to get through it faster, PLEASE let me know... I don't know if I will be able to help you, but dammit I will try my hardest.... My issues aren't nearly as severe as a lot of you out there waiting.... and to me... that is just wrong.... :(

In the meantime...I am off to find some better music for us all to listen too....LOL!


:ghug::Karl::ghug:
 
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Cat-a-Tonic

Super Moderator
Thanks for thinking of me, Silver. :) Some days being undiagnosed really is like torture. But only 9 days to go till my pill cam, I know I can make it. And 13 days for you until your consultation, I know you can make it too. We can be strong together! My mom is a marathon runner, and she has a mantra that goes "I'm one tough chick" when she's getting tired. Silver, you and I are two tough chicks! ((Hugs!))

Also, here's something helpful that I thought I'd share on this subject. If you find yourself facing a long wait for an appointment in the future, this is something that worked for me in the past. Back in February when I had my first consultation with my GI, he said I should have a colonscopy. My finances are tight and my insurance isn't great, so I had to take a couple of weeks to figure things out. By the time I called to schedule the scope, I was told by a snotty receptionist that clearly I wasn't a high priority case since I didn't call right away, so they said the soonest available opening was in June - over 3 months away. I was so upset, but for awhile I accepted it. But after another few weeks of being miserable and having lots of d, I called them in tears and said I couldn't last until June and that I needed a sooner appointment. At first the receptionist said they had no openings and no cancellations whatsoever, but when she let me speak to the nurse, I was given a lot more sympathy and was told I could have my scope done the following week (they even said they could have gotten me in the next day, but it was late in the afternoon when I called and I hadn't started the prep yet and I had already eaten lunch, so I wasn't able to do it then). So if you're in a similar situation, don't hold back your tears and ask to speak to the nurse or doctor, since they often have more authority to allow sooner appointments than the receptionist does. It might not work every time, but it worked for me (and now I make sure to schedule everything right away so they don't think I'm low priority!).
 

DustyKat

Super Moderator
Hey Silver,

I will never forget the times I had to wait with Roo, even if it was a few hours for a blood result. I am counting the days down with you buddy.........................and waiting.

Always there with you, :)
Dusty
 
LMAO, that is such a great way to describe the waiting we have to endure. I have 9 more sleeps until resection surgery and I was given the date 3 weeks ago. I also have used the term mental torture, it really is like the ultimate emotional endurance test. I don't know if it is better because I have had this surgery before and so know roughly what to expect or worse because I can imagine, in minutiae, the whole process!

It is really difficult to shove this into a wee compartment and find as many distractions as possible but we have to try or go mad :)

The only thing getting me through is knowing that I will get my life back...oh and hopefully be able to eat a medium rare sirloin steak with bernaise sauce, a rocket salad and thick chips instead of ensure and M&S Ultimate Mash. Yes food fantasies are providing a fabulous distraction.
 

Crohn's 35

Inactive Account
LMAO, that is such a great way to describe the waiting we have to endure. I have 9 more sleeps until resection surgery and I was given the date 3 weeks ago. I also have used the term mental torture, it really is like the ultimate emotional endurance test. I don't know if it is better because I have had this surgery before and so know roughly what to expect or worse because I can imagine, in minutiae, the whole process!

It is really difficult to shove this into a wee compartment and find as many distractions as possible but we have to try or go mad :)

The only thing getting me through is knowing that I will get my life back...oh and hopefully be able to eat a medium rare sirloin steak with bernaise sauce, a rocket salad and thick chips instead of ensure and M&S Ultimate Mash. Yes food fantasies are providing a fabulous distraction.
I know exaclty how you feel. Unless by some magical miracle my flares and ulcers go away (which a scope just proved more) I am heading for a 3rd surgery too...maybe. Hard on the brain I know. But if you are young and in good shape you fair through it alot better. Good luck keep us posted if you can.:wink:
 
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