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Topic: How Helen got me through my day.... (Read 220 times) |
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Lizzie2
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How Helen got me through my day....
« on: Sep 7th, 2006, 11:22pm » |
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So this morning at like 6:30am my time, I IM'd Helen to say that I was going to get in the car in 5 minutes and would she call my cell phone so we could talk while I drove to work? Well...she got a phone call and didn't call me until 7:15 my time, but that worked out because I just happened to be in the break room putting my back and sweatshirt in my locker - so we planned to FINALLY get to talk on the phone at around 11:15am....I was taking lunch from 11-12, and I wanted to go to the pharmacy in those first few minutes.
I had to pick up my Frova, Amerge, and 2 other meds from neuro. Yesterday they were trying to tell me that I can't get my frova and amerge filled every month - 18 tabs of each, every month. The pharmacist today was telling me that he was concerned because you aren't supposed to take triptans as often as I do. He said, "Are you really having attacks that often? Because that's not normal..." (Like I need a reminder that I'm not normal...) So I explained that I have a headache all the time and then the clusters, too... I said that I've been filling these every month for over a year - why is it that NOW they are having a problem with it?
The pharmacist kept saying how the manufacturer's information says you can't take them that frequently. I explained that we use drugs off-label all the time, and then he said, "but that's with proper documentation..." Basically, he was trying to say at first that I can't safely take Frova and Amerge 4 days a week...2 days of Frova and 2 days of Amerge - even though that's how I get through work. They prevent CH during work for me and also drop the migraine down to a level where I can think clearly. I explained that I was going to England on Wednesday and that I can't go without my meds.
Then he starts saying that I need to get documentation saying that my doctor allows me to take both of these meds in the way I've been taking them. I am working 12 hours like every single work day until I leave, and I had no idea how I was going to be able to get over to the headache center and talk to someone - the last time I tried to do that, I had a hard time getting anyone to call me back. I started feeling really overwhelmed. I don't know why people always seem to make everything that much harder for me.
And so I ended up in tears. I was at work, but on break, picking up my scripts from the pharmacy, or at least attempting to! The guy was shocked when I got upset. He kept saying, "I'm not trying to upset you. You're going to get the meds before you go. We just need to get this documentation straight." I just couldn't help myself. I think the lack of sleep and extreme stress are making my frustration tolerance very low and making me tear up over the smallest things... Not cool! Everyone in the pharmacy was looking at me - which included a lot of hospital employees... I finally convinced the pharmacist to also call the headache center and try to get the meds approved.
Then once again the pharmacist was trying to say he wasn't trying to upset me, but I said, "This has been going on for over 5 years now, and sometimes I just don't need this..." And then he kinda put up his hands and I rushed for the door - at that point, on the verge of sobbing hysterically as I busted through the "back" door of the hospital, right onto 11th and Chestnut Streets. I pulled on my sunglasses and first called my mom in hysterics, who kept telling me to "get it together..." but I think I was just so overwhelmed that I just really needed to cry. I was crying about a lot of things, in the end. I haven't yet cried over the babies - and other things were upsetting me....and I think the pharmacy thing just sent me over the edge.
So then Helen called me. And she listened to the entire story and agreed with everything I said - which was what I really needed. While we were on the phone, I went to Wawa (convenient store) to buy something to eat and then sat outside the library, eating my lunch and talking to her about the trip. That really cheered me up...I eventually was able to stop crying. I couldn't believe how I just busted out in tears like that! AHhhhhhhhhhh
So by the time I got back to work, I was fine - no more tears. The pharmacist actually called the unit twice to apologize for making me upset and also to say that he talked to someone at the center right away and they approved the meds, so I could come get them at my earliest convenience. I'm sure my face was red as a beet when I went back down to get the meds, since I was rather embarrassed, myself! While on the phone, I also apologized to the pharmacist for flipping out... I never yelled at him, and I think my tears were in part because I was holding in all that frustration, trying to be civil - but I apologized for getting so upset.
I really really really needed a clusterbuddy at that moment...someone who understood why it was so dire that I have both my triptans - and someone who understood how it is sometimes upsetting to explain why you have to take these meds so often to people who don't understand CH or anything else. I'm so glad Helen called....! Plus, we had to go over some of our plans.... (Don't worry Matt - none of them include "doctoring" up the spam or anything like that!!)
Thanks Helen - you really are a clusterangel.....and I can't wait to give you the biggest hug ever!!!!!!
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cootie
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Re: How Helen got me through my day....
« Reply #1 on: Sep 7th, 2006, 11:37pm » |
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Sorry for all your frustrations and hope 'getting it all out' has given you some form or relief ? Good grief I consider myself the frustration queen and I don't have it nearly as bad as you.......hell I get upset and start crying when I can't find a matching sock.....I take it personal. (as if the one I am looking for deliberatley escaped the dryer and hit the streets.....thus.....the reason you see a dirty wet lonely sock along the road every once in a while). I think the pharmacy deal is cuz of so much risk of lawsuits with meds and 'everything'.......so they go overboard and go by the 'book'. Hope you enjoy your trip to England......sumday I wanna learn an accent Pam 
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Kevin_M
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Re: How Helen got me through my day....
« Reply #2 on: Sep 7th, 2006, 11:42pm » |
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I'm glad the scripts worked out for you finally today Carrie. It's been many years since I had a similar pharmacy problem but I remember it as highly disconcerting as well.
Do you think Helen will let you take her home after your visit?
She called me once, a Syd Snot, so I know she understands me too.
Hug to ya
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| « Last Edit: Sep 7th, 2006, 11:48pm by Kevin_M » |
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LeLimey
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Re: How Helen got me through my day....
« Reply #3 on: Sep 8th, 2006, 3:19am » |
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Carrie I think I'll send you back home with a nice cake for that pharmacist to thank him for all his help and understanding....
Kevvie Wevvie now just shut up bogieboy 
I haven't rung you yet but when I do rest assured, I'll be looking at the clock to my time zone NOT yours! 
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Katherinecm
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Re: How Helen got me through my day....
« Reply #4 on: Sep 8th, 2006, 5:00am » |
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I'm happy you found support when you needed it. 
I was given some grief about Amerge this week too. I'd never tried it before but had read some study about how chronics who don't respond to most meds are doing well in case studies with Amerge as a preventative. I just changed pharmacies and the guy gave me a lecture over the phone when I called in to check the status of the precertification I had already asked for. I flipped out too, and after twice insisting that I have chronic cluster headaches, this is an off-label calculated risk, and him arguing back in that holier than thou tone they get, I said, "Well the next thing the doctor is talking about is experimental brain surgery. Can you tell me if unproven possible future heart or liver damage is riskier than the 'acceptable mortality rates' of surgery?" He said he'd fill it, and was perfectly nice when I went in to pick it up. I'm still annoyed, and am seriously thinking of switching back to the old pharmacy even though it's a drive from my new home. At least they've seen me go through every drug there, know me, and would never think of being so rude.
Maybe the new fda warning about triptans and antidepressants and seratonin syndrome is making them all flip out regarding all the risks of triptans. At least I think it's a new warning... my neuro mentioned it at my last appointment too. (just googled it)- the warning was in mid-july, so it's new since my script changed. Perhaps that was the problem?
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Tiannia
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Re: How Helen got me through my day....
« Reply #5 on: Sep 8th, 2006, 10:52am » |
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on Sep 8th, 2006, 3:19am, LeLimey wrote:Carrie I think I'll send you back home with a nice cake for that pharmacist to thank him for all his help and understanding....
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Helen it is not nice to bake a cake with laxatives in it.
Carrie - I am glad that it worked out for you hun. It is so hard to get them to understand how much we life off these meds. That without them, we dont life just survive.
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sandie99
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Re: How Helen got me through my day....
« Reply #6 on: Sep 8th, 2006, 1:29pm » |
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Carrie,
I'm so glad that your clusterangel was on call! 
That shows just how important understanding people are! Helen is truly a clusterangel. We should have award in here with that title, "Clusterangel".
Best wishes,
Sanna
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"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
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HappyElaine
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Re: How Helen got me through my day....
« Reply #7 on: Sep 8th, 2006, 4:46pm » |
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There no one any better than a cluster friend to makee the day brighter!
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Fear less, hope more;
Whine less, breathe more;
Talk less, say more;
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And all good things are yours.
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Charlie
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Re: How Helen got me through my day....
« Reply #8 on: Sep 8th, 2006, 5:09pm » |
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Nice going Helen.... Yer a peach. 
I'm still hoping that one day I'll be able to get a walk in, walk out day at my pharmacy. The de-personalization has made getting scripts filled a two or three day even and about as much fun as a colonoscopy.
Glad you're back on track too Liz.
Charlie
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