A place to vent

[Patti UT]

There There Now,   see how quickly this thread settled down and became a venting arena for us who are caryring around the extra post surgery weight.  Now that's something I can really VENT about. In fact I want to RANT about it, cus about it, scream about it..  I had the opportunity to go on the weight watchers journ y along with gennysmom in Jan, should have, seh's dropped her 20lbs. and her it is summer and I still got mine. Like everyoneelse her has seai, The lack of being able to be mobil has really packed it on.  More  frustrating is when I do get going on exercise,  I can't stay consistent dur to too many bad head days.  But I keep chipping away at it best I can but agree it is very discouraging.  SKirt, Hell, I'm going to visit Omar the tentmaker for my swimsuit this year.  (he he he)

All joking aside. I have taken a long break from this forum that has helped me so much in so many ways. I got to a point I needed to kind of see if I could move on from talking about it over and over.  The break has helped, but coming back now and reading the venting here on this thread helps me to realize that no matter how much fooling I do of the world around me that I'm Ok now, But truth is, I'm not. All the stuff listed in these vents I share with all of you, I don't need to mention them because you all have covered all of them. But It's this forum that is the ONLY place I can come to find the support and understanding that NO ONE else can give me.  So thank you all, like I've said before on past posts,  I owe you all $100. per hour for the therapy.

Oh and BTW, Matti, would you turn that darn car alarm off already, my neighbor just told me it was still going, of course I can't hear it even with me good ear over the tinnitus. LOL  That is hillarious, what else can we do but laugh.  Fell down in my driveway a bit ago looking up at the house with the satalite TV guy, then after getting up, turned too fast and walked into the wall. it was 9am, sure he thought I was hitting the bottle already. All we can do is laugh, but sometimes we do need to vent about it.

Patti UT

[Jeanlea]

Okay, my turn to vent about a weighty issue, my weight.  I am lucky in that I can exercise without any problems.  But the food end is where I have a problem.  I haven't gotten over the "I had a brain tumor and can eat what I want."  It's also really hard for me to stick with it, when I know the body is attached to a face that is no longer working properly.  It's hard for me to get past the fact that my face isn't looking right so why should I worry about the rest of me.  And then there's the chocolate that keeps calling my name...
Jean

[Jill Marie]

Oh the weight of it all!  I Love this thread!  Everytime I thinki there is nothing more to post about someone comes up with an issue I can relate too!  While the boys where in there grade school years my husband and I gained about 20 pounds.  We joined a gym, lost the weight and were having fun.  A couple of years later I broke my leg, 2 weeks after finding out I had a tumor.  I spent the summer on the couch with a tri-lateral leg break and a Facial Tumor recovery.  On came the weight, lost some, gained some, lost 20 pounds a year ago, need to loose another 10, you guys give me hope and inspiration.

My vent for today is not AN related, I was really looking forward to the weekend, feeling upbeat and all.  Then BAM, I got rear ended while driving to the bank for my company.  Luckily my pickup had a hitch on it so it didn't do any damage.  However, I didn't have a hitch so my back and neck are giving me some trouble, got the heating pad on as I post.

I feel better after reading the posts, kind of ironic isn't it, feeling better after reading about others problems.  I feel better because I see that your problems are my problems too!

PPearl - so glad you posted your vent.  Now I see you as ALL of you not just a moderator.  I understand your wondering what medical issue actually causes what side affects.  I wonder if I'm the way I am because of age, is it because I broke my leg falling and fear falling again or is it because of my eye and the ointment I put in it that causes me to see things differently?  You do indeed have a reason to vent!

 

[Gennysmom]

Jill Marie....luckily the weather here in Seattle has been gorgeous this last week (I mean it's raining cats and dogs, wink! wink!)...I'm assuming you live out here somewhere since you went to Mangham....and I'd rather get outside than sit inside and eat.  I'm sorry you got rear ended today....as someone just coming out of some back issues and venting about now dealing with regular health issues in addition to the AN, I can relate.  My heating pad is my best friend, and we sleep together a lot   

Jean...try feeling that way with your mother living with you taking care of you post surgery constantly running to the store to get you treats to  make you feel better!!!!  I still do that, but try to be better at least 51% of the time.  I think my parents declining health helps give me a reason to get up and stop munching on chocolate....besides wanting one more reason to be more like myself before surgery, and I also don't need any more health issues to deal with....anything to decrease that risk I'm all for.   

[amel]

I've been wanting to vent for a long time - great idea.  Let's see...tinnitis and hearing loss are nothing I want to live with.  I can't believe this is my fate.  It's frustrating speaking to clerks in stores or servers in restaurants because I barely hear them - and you're not going to go into your life story and explain everything to them.  I guess I can handle the stares from people when I'm walking with my cane, but I really want to know what's so odd looking to them.  I also get stared down by older people when we park in a disabled spot with my permit (they sometimes stop staring when I get out with my cane - or they stare more).  People I know who see me tell me "I look great" and they're glad I'm doing so well.  I reply thank you, but I think "I don't feel great, and what makes you think I"m doing well?"  Loss of independence is also rough, which causes me to do more than I probably should.

I also am so ready to jog and lift weights!  The summer is not a time to go up a pants size.  Ok, one more vent - I miss music in stereo. Ok, one more vent - it's Friday night and I'd like a glass of wine, but I'm still taking pain pills because it's the only time I feel somewhat normal on my surgery side of my head.  Now I'm done - that felt great! 

[neal r. lyons]

Ya know just listening to someone else's woes can make you feel bettter! It's also informative.  I haven't even had surgery yet.  Will at House Ear Clinic sometime this month(Translab) Unless i change my mind again of course.Hummm, all these things -loss of balance  , adjusting to deafness, dealing with insensitivity. I'm sorry, i just will not think about them much, or?  Ya know i really don't think i have all that much to complain about.  I,m so much better off than many, for which i need to give thanks.  but wait just a minute- i,m supposed to be in Alaska right now working and getting lots of overtime in what was(is) going to be my last season working for Blm Alaska Fire Service>  I,m supposed to be in an airplane flying over the friendly and beautiful skies of Alaska,having strapped down 4000 lbs. of cargo which we are delivering to a remote airstrip to support wildfires.  We,ll drop off the supplies and then go pick up a 20 man hotshot fire crew and deliver them to another airstrip in Alaska  where they'll be deployed for another fire.  I'm not a pilot but the guy responsible for the cargo(loadmaster)   Well i am really missing the fire season in Alaska and going out with a big finish!  This is my 27th consecutive season.  But you know i still feel like a lucky guy!  I,m going to get this damn tumor removed, pray for minimal complications, recover, and perhaps even salvage part of the fire season.  Hell, even if it doesn't work out, i'll probably retire anyway!   Thanks everybody  Godbless  Neal

[marg]

This has been a great section to read. I think it took me a couple of hours to read all the pages, laugh, cry and feel like I have a family here who REALLY understands.  Thanks for sharing your stories.  I am  less than 3 weeks out from my AN surgery and have some things I'm dealing with too ( balance,  some facial paralysis  including an eye that doesn't close all the way - but hopefully will in a few more weeks and some tinnitus).  I'm grateful to be on this side of my surgery  - waiting 5 months for my surgery was forever.    I too grieve that music no longer sounds the same ( I was a singer/voice teacher  at one time), movies are hard to understand with SSD especially over the music....but closed captions are now my friend.  I am worried that I won't be able to go back to my 2nd grade teaching job next Fall (how do SSD  deal with a bunch of people talking all at the same time........ and that is ALL 2nd graders do).  
       One of the reading units I cover with my kids is called "Being Brave"  At the beginning of the unit the kids think that being brave means not being afraid.... but after reading several of the stories they realize that Being Brave means that you can be afaid- but you still do what you need to do in difficult circumstances.   I see all of you as very brave people ...who on a daily basis deal with difficult situations that don't always get better.  I appreciate you.  Thanks for being here.
Margaret

[matti]

marg - Jeanlea has SSD and teaches elementary school. She recently got a TransEar hearing aid and has found it helpful.  You might want to contact her, I know she will be of great help.

Cheryl

[Jeanlea]

Hi Marg,

As Matti mentioned I teach in an elementary school.  I teach 4th graders.  They talk as much as second graders only louder.  lol  I taught them for a year without any hearing aide. It went okay.  This year I got the TransEar.  It doesn't seem to do much until the few days I forget it.  Then I notice it.  I found myself cupping my hands around my good ear to capture more of the sound.  I was just thinking that I don't do that anymore.  (Except for today when once again I forgot my TransEar. I was in a hurry to go to my son's track finals.  Their team won the championship!)  Anyway, my teaching was not hindered in any way because of my SSD.  And walking between desks and small children is good for balance.  I reminded them to keep their hands in their laps when they sat on the floor so I wouldn't accidentally step on them.  I don't think I really would have, but any tricks that work I use.  Lol  Good luck going back in the classroom.  Nice that you will have the summer to recooperate.

Jean

[1wareagle]

Hi Everyone,

I have been reading all the post on this topic since day one. I feel like I know all of you a little better now. I have laughed, cried and mostly understand what a lots of you are going through. My surgery left me deaf in the AN ear and I have all the facial problems too. All of your stories seemed so much larger than mine that I felt ashamed to complain, until now!

I got off work early today to attend a good friends daughters wedding. Wedding are not my thing but I felt like I had to go to this one. To get out in large gathering now makes me so uncomfortable with SSD, (not to mention my droopy face). The BAHA helps a lot but not in large crowds. First I sat on the wrong side of my wife and family. I couldn't hear them tell me anything! When I tried to talk, my daughter told me I talk too loud. So I just sat there and tried not to embarrass her. Well we got through the wedding and made our way to the receiption. I forgot to mention there were around 350 people at the wedding. As we made our rounds around the tables to eat I tried to speak to everyone. Right before I got to a table to sit down to eat a lady came up to me and started to fuss at me. She said she had tried to speak to me 3 times at the punch table and I just ignored her. I said I'm sorry but I lost my hearing in my right ear. She said your wife told me that, I guess you have all the excuses now.......Blind and can't hear!  I felt bad the rest of the evening. When we got home I asked my wife what she told her. All my wife told her was that I lost my hearing, she told her nothing about my surgery and all my other problems. She thought she knew. I guess the lady now just thinks I made it up about my hearing. After this experience it will be a LONG TIME before I have any desire to be at any kind of function in my town. Now I wonder how many other people I probably offended.

Sorry for the vent but I feel so much better now!

Ellis

[TP]

Ellis, I totally understand. I miss half of what people say and my daughter (she is 17) seems to be bugged the most when she has to repeat herself because I can't understand what she is saying most of the time. When I remind my family of my ordeal (which I seemed to do quite often) they get all nice and supportive for about an hour but they too are insensitive at times.

My venting for today is I am sick of my double vision.  I am approaching my year anniversary of my AN removal and have been seeing double for one year. I have an appointment on June 11 to see a specialist, I have not talked to them yet but I sure hope they can fix my eye.  I will live with my facial issues but I WANT MY EYE BACK! I AM SICK OF WEARING BLACK TAPE ON MY GLASSES!

[Sue]

Here's my vent today.  I think that all parking lots should have a section just for SUV's and Trucks and a section just for sedan type cars.  That way, I could find my car in the lot, and I could back out of the parking space much more easily because I could see where I was going!!  See, sometimes I can think of other things besides my stupid AN!!   

S in Vancouver USA

[Captain Deb]

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

[matti]

A few times I have forgotten where my car was parked and then in desperation pressed my key alarm, only to be in bigger trouble because of the SSD and no directional sound

Cheryl

[marg]

Hi Jean,
   Thanks for the encouragement.  I am glad I have the summer to recoup.  I too go for any "tricks" I can use with the kids.  I will be sure to try the 'hands in your lap' so I don't step on them  .   I have a hearing test a week from Monday to see if I have any hearing left.  I really can't tell yet (still feel like I have fluid in my ear) but ..... sometimes I think I hear something..........who knows.  Anyway it is nice to have an option that can help me teach my last 5 years.... I want my full retirement !.  Actually it will be 35 years in teaching by then ( I taught  1/2 time for several years with my girls were little so this year is Full credit of 25 even though I have taught for 30).  Also encouraging to know that you were able to teach with SSD.  How did you use an overhead projector?  I had enough problems with it this year with the loss of some hearing in my AN ear.  I'm thinking of asking my district for an 'Elmo' in my classroom. It  doesn't have a loud fan and I would be able to  hear the kids. 
     Today for the first time when I woke up I 'felt like me' again....of course that was before I put my glasses on (left eye doesn't close all the way) and got up (felt like I was walking on a rolling ship) and looked in the mirror ( a 1/2 way working face) .....  lol......  anyway, I'm glad I Feel better. .  I will keep my focus.... it's not quite 3 weeks since surgery.... things will get better.
Margaret