A place to vent

[marg]

Ellis,   I have to say this....That lady was totally rude!  She is the one with the problem.....not you.  She could have asked your wife why you couldn't hear.  Don't let this keep you from going out.  I have not had my first 'outing' in a large group yet (and yes I am nervous about it)..... but my husband and I had a conversation about it yesterday and I told him if people said something to me about not hearing them, I would just tell them " I had a brain tumor and had brain surgery to remove it.... I totally lost my hearing in my left ear but I'm thankful to be alive."  After reading what you wrote, I'm going to ask my husband (and daughters) to just state the facts to people if they ask too.  We are the ones who have gone through most of the ordeal.... our families can help by giving information to other people if they ask them.  That will take some of the pressure off us.  As a matter of fact I'm going to tell my friends to feel free to share  with others too if they are asked.  Of course that won't help in groups where we don't know people...... in that case I'm thinking of having a T-shirt designed that says something like 'this ear works - talk here..... this one doesn't .....with arrows pointing to the ears.  I'm still working on it.....
  I do have other friends who have lost hearing in an ear because of other reasons and sometimes people think they are ignoring them..... I guess it's just one more thing to deal with.  Of course we don't want to offend anyone.... but this is something beyond our control.
Margaret

[Joef]

Funny thing happend this Christmas at my wifes office party .. they had a band .. very loud ... I hated it .. but my wife said "Dont stand with your feet so far apart like you allways do". .... and then it dawned on me.... she was right . Ive been doing that for YEARS at cocktail parties and such .. but I do it because its easier to balance ..... I've been doing this for years.. without realizing why.... and know we know the rest of the story.....

[Sue]

Sue,
Just think, when the Bush/Saudi oil Cartel pushes gas up to $5.00 a gallon, we'll all be trading our SUVs in anyhow.  Just give it some time!

Capt Deb

My son told me yesterday that he was thinking about trading in his big red dodge ram pickup.  He just loves it...but I don't know what he was thinking when he bought it a not that long ago (18 mos-2 years).  Gas wasn't so cheap then either.  It's a pretty truck..hate to see him get rid of it...but it's a gas guzzler.

Anyway...Big vehicles on the right, small vehicles on the left!!

Sue in Vancouver USA

[Jill Marie]

Gennysmom, yep I live in the Evergreen State too!  I was born and raised in Goldendale (70 miles SW of Yakima, 30 minutes from The Dalles, OR).  I moved to Spokane after High School and never left.  Dr. Mangham is great as far as I'm concerned, oops, forgot this is the venting thread, tell you more later.  As for the back issues I'm doing fine now, used the heating pad (actually rice pack heated in microwave, works great) again Saturday night but doing fine now.  I have had a bit of trouble wtih my back over the years but have learned how to take care of it. 

Ellis, I read your post a couple of days ago and was so angry about what the lady(not the right term for her) said to you at the reception that I couldn't find the words to post to you.  I'm still having trouble but wanted to let you know that she is luckily a rare one, she would probably be that way to anyone no matter what the situation was.  It's like the girl I work with, she still doesn't undserstand that most of the people she talks to on the phone aren't mean & stupid like she thinks, I believe she is the one that provokes them so it appears they have a problem when she is actually the problem.  I'm sure you will find that most people are a LOT more understanding of your situation.  Please don't let ONE person keep you from doing what you want.  I'm sure we have all offended others some before our Tumors some after.  I recall going to my oldest sons middle school for a teach parent conference, as I entered the building I was a bit winded from walking all the way there and not looking all that cherry.  I met a teacher in the Hall and they asked if they could help me, I told them I was there for a conference.  He then said why don't you smile, it can't be all that bad, I said it's not, I'm just winded from walking 3 miles, he then said, then give me a smile, I said I can't, he said give it a try, I said I can't as I had a Facial Nerve Tumor removed a year ago and physically can't smile.  Someone once told me I was insensitive to say that, however I tried to let it go but he wouldn't let it go.  I didn't want him to think I was a cranky person so I told it like it is!   

[1wareagle]

Thanks Margaret and Jill Marie for the understanding words. I had to let you know what just happen. The LADY ,who was so rude to me at the receiption, came to my job just now to apologize. She must have went to someone complaining about me not speaking. That person must have set her straight. She said she would have never said what she did if she had know about my surgery. I played like it didn't bother me and that I was glad she had not noticed my drooping face. But it did bother me and I hope I never do the same to anyone else.

Ellis

[Gennysmom]

Jill Marie....so the other side of the state!  My best friend is living now outside of Davenport/Reardon.  I'll have to give you a jingle if I head over to visit her!  I'd love to now, but she has 2 boys, one is 2 1/2 and one is 10 months, and I just can't take it after surgery.  I love them all, but the thought of being trapped in the boonies with 2 loud kids makes me want to take an Ativan right now.  I don't know how you ANers with small kids do it, I have a huge amount of respect for you all!!!!!

Ellis, I hope this teaches her a lesson that she can't judge a book by it's cover.  Good for her to come apologize. 

I'm in a great mood today, but I'll add a vent just because I know it bugs me...and I'm thinking about it as I listen to you guys...other people's expectations of your surgery recovery...and that you have to keep constantly reminding them of your condition so they don't judge your behavior as lazy, insensitive, uncaring, etc.   And as much as others may get annoyed at us saying "what" all the time, I get tired of saying "I'm sorry, I can't hear you, you're speaking into my bad ear".  Nothing earthshattering, but just one of those straws that builds up.   I am extremely thankful to my better half who has yet to do any of that.  He is constantly vigilant in being aware of and attending to things I am now deficient in.   Three cheers for that!!!!!   My mom still can't remember which side I'm deaf in, so I really am aware when those I'm close to take that extra effort to notice. 

[Windsong]

A grey day here... cloudy and cool and I'm feeling glum....

It might have begun on the weekend.... let's see, i went off to buy this chair and although I had my cane looped over my wrist i might have grabbed my back once or twice as it was bugging me... as I left the lady who served me was outside having a cigarette and asked me curiously if i might have arthritis... she did and noticeably so whereas I look like nothing is wrong with me...so, i blithely said um a bit but other things bother me more....after mentioning that I had this "thing" in my head and one or two other "maladies" too my mind drew a blank hahaha as I couldn't recall any more on my list....even when i have to see a new doc about something i draw a blank sometimes... i s'pose I could have a card made up and laminated which i could whip out of my purse?

Then i picked up a bunch of movies, and grabbed the wrong boxes which a nice clerk kindly pointed out, so i replaced them,  got the right ones, accidentally knocked over a bunch more onto the floor, and muttered something about being ah "mentally.... challenged"... (forgot what i was saying in the middle of the two words so that was the best i could come up) to which he said ah "you're not the only one, we all have days like that".... so i smiled and said "nice to know I'm not alone in that"  and decided not to mention the health stuff of course...

Then I got a call about a former colleague who is having to take early retirement now due to health and did i want to go to the party....and i have realized no i don't....but i still feel bad about that as I think i should.... but I am avoiding it as i feel too glum being reminded of my own no-choice-early-retirement all of a decade ago... you'd think i'd be comfortable with that by now and most of the time i am...but nope i see i am not right this very moment...

When I had my An treatment four of us who worked together were all having treatment of some sort at the same hospital and a fifth at another.....makes me think oh forget about the cell phone, and what was in that building that got us all, anyway....

Well, tomorrow is another day and three family birthdays are being celebrated so I know i'll cheer up....just one of those days today I guess....

[marg]

Ellis,
    I am so glad that the lady apologized... and that someone 'set her straight'.  It did take courage for her to come to you.  Maybe next time she jumps to a conclusion she will think about what happened at that wedding reception and give the person the benefit of the doubt.  We sure learn a lot more from our mistakes than our successes.  And I say Hurray for the person who set her straight... that person sounds like a good friend to me.
Margaret

[Jill Marie]

Gennysmom,  I've been to both Davenport & Reardan many times.  My husband and I love small towns, I grew up in one and he wishes he had.  If you head over this way let me know ahead of time, perhaps we can meet there.  I totally agree about having to explain to others that you didn't hear them, one time I was at a meeting and two groups of people were talking at the same time & I asked that we all keep on the same subject.  One lady said what's the problem, you have 2 ears to hear with don't you?  I said, NO I don't, I'm deaf in the left ear, besides I only have 1 BRAIN to process what I'm hearing. I should have felt bad about making her feel uncomfortable but I ddin't as she had a bad habit of talking to others when she should have been listening to those running the meeting.  My better half does a good job of helping me too, he tells me when someone is talking to me and I don't know it. He sits on my good side so I can hear him, unfortunatley that means someone who doesn't know I can't hear on my left side is sitting on that side. 

Windsong, I'm glad you have some family birthdays to celebrate and cheer you up.  I too grabbed the wrong movie boxes the other day.  I usually rent movies from the grocery store and there you don't run into that problem, however, I went to Hollywood and didn't realize they left the display boxes out and you needed to pick up a NON display box, I thought the display box just meant that you took that box to the counter to get your movie.  Now I understand why their is no description of the movie on the back of the display box, DUH!   

[Ellenmn]

Some of the people here at work are starting to find out about my AN and up coming surgery and are starting to treat me like I'm an invalid. I'm an IT Manager and we a staff but I contract out some network needs. To keep expenses down I do allot of things myself like setting up PCs and Printers. Anyway the other day I had to move two people to a different office and then I had a PC down in another area so I had to bring in a replacement. Well I come in several hours before anyone else so I had all the moves done before anyone got in. I must have had six different people come up to me and asked me if I should be doing that, why didn't I wait for one of the guys to come in.
Yes I may have facial spasms, slight balance problems, hearing loss, and headaches, but the rest still functions perfectly fine.

[Jill Marie]

Ellenmn, I know you know your coworkers are just trying to show concern for you put it's still frustrating to feel like they think you can't do your job or more imprtantly make you feel like perhaps you won't be able to after surgery.  You will of course have some down time but hopefully all goes well and you will be back at work soon. 

A few years ago the place I work at had an armed robbery so we added on to our counter, we put up a wall made of wood and grated metal that was hard to look through, we also put in a door that would lock.  Do to some changes in the law we will be doing a lot more paperwork and therefore making the customers wait in line longer.  To help speed things up we have done away with part of the wall so we can help 2 customers at once.  There is now a big hole in the wall while we figure out how to change things.  One of my coworkers locked me out today so I jumped up on the counter and slid head first through the hole and landed on my feet on the other side.  As I approached the counter the girl I worked with said, "I bet you can do it, Jill!"  As the guy that locked me out prepared to pick up the pieces.  Another coworker came in and was told about what I did, and he said aren't you "50?"  Yes, I am but don't tell me I can't do something & don't encourage me to do something because I will.  Goodluck with your surgery! 

[Captain Deb]

Well, OK I need to VENT!!  I reached the $2000 cap on my prescription benefit with BCBS and it's only JUNE!!!!  Now I get to pay retail for my meds which just SUCKS! I've got to decide which ones to stay on and which ones to not.  Sleep meds and antidepressants I guess will go as well as HRT..I guess Dr Love will have to put up with a sleep-deprived, depressed, and homocidally hormonal menopausal me. My Imitrex alone will cost around $200 not to mention the Neurontin at around $100. I'm on another med called Imipramine with will run another $50-60. My a$$ is definity chapped over this.

GGGGGGGRRRRRRRR................

Capt Deb

[Ellenmn]

Well, OK I need to VENT!!  I reached the $2000 cap on my prescription benefit with BCBS and it's only JUNE!!!!  Now I get to pay retail for my meds which just SUCKS! I've got to decide which ones to stay on and which ones to not.  Sleep meds and antidepressants I guess will go as well as HRT..I guess Dr Love will have to put up with a sleep-deprived, depressed, and homocidally hormonal menopausal me. My Imitrex alone will cost around $200 not to mention the Neurontin at around $100. I'm on another med called Imipramine with will run another $50-60. My a$$ is definity chapped over this.

GGGGGGGRRRRRRRR................

Capt Deb

Write to the companys that make the meds Many of them have program for people who can't afford them. Or maybe talk to your pharmacist to see if they know of the programs available

[TP]

Captain Deb, I am sorry to hear about reaching your max prescription benefit. As a suggestion, have you tried Melatonin? I recently bought the dietary supplement to help with sleep. I haven't had the need to take it yet but friends of mine use it and they say it works.

[Raydean]

Deb

Time to get on the phone.  Call your Pharmacy and find out the makers of the drug.  From there
go online and contact the makers directly.  I've heard of cases where dealing direct with the company helps.  Many of the programs are based on income and I think you'll end up in the same boat we were in, just over the limit for help.  So this post will be from that perspective.

Contact your insurance, some will have you pay a certain amount then they'll start paying again.

Call around for the best prices.  Your neighborhood just around the corner pharmacy may not be the cheapest.  You would not believe the amount that the same prescriptions can vary.  Depends on the contracts.  Some pharmacies will keep the most popular drugs at a discounted price, but raise the price on other medications to offset the reduced price.  You could very well be helping to pay for someone else's medication!!

Ask if the drugs are available in generic versions.  Ask what the savings would be for buying in bulk,
 Ask what a 30, 60, 100, 200 size  would cost.  You'll be surprised at the savings.

Talkto  your druggist, ask what might be available under a different name.  As an example Chet took augumentin,  which when we had coverage not a  problem, but it became a big problem without drug coverage.  I explained the situation to my pharmacy and they did some research and found it came in a generic at 500 mg.  Saved us big bucks!!  (Thank you Walgreens)  I can't stress enough how important it is for you to talk to a pharamcist directly, explain the situation.
In our situation Costco was cheapest for one of his drugs and Walgreen's for the other.


Hit those doctor's up for free samples. 

Do your homework, research and find the cheapest place for each prescription. keep a written log. Then talk to your local pharmacy, sometimes they will match written quotes,  remember you have to call and ask because I don't think by law that they are allowed to advertise.

Check into the Canada Pharmacies that shipp, compare there prices.

Ask the pharmacies if there are any discount drug programs available for those who's incomes does not meet the criteria for help.  This may help in reducing costs.

Deb, I hope these ideas help,

Hugs
raydean