ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: nancyann on December 12, 2006, 07:53:53 am
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Hi everyone,
Don't know what's wrong with me the past 2 days. I'm trying to get over this feeling, but I'm feeling so sad. I'm at work & just burst into tears. I hate when this happens. I'll be doing great for awhile, then BAM, the blues set in.
I feel like a fool getting upset, I have so many good things to be thankful for.
Does this sudden 'emotional upheavel' happen to others?? Is it hormones ??
Thanks guys, just needed to vent. Hope I didn't take the wind out of anyone else's sails this morning. Nancy
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Hi Nancy,
No, you're not alone in that blues feeling at all! I had lots of episodes in the early post-FSR days, and I ahd CK. Actually, somebody put it down to Post Traumatic Stress Syndrome, which I can quite believe. We all went through soem pretty heavy and severe ops, so ya, I think we can feel sad and get the blues. I would imagine it's quite normal in fact. It does pass with time, and that the thing, give yurself time to heal. Recovery takes time and lots of care. Mind yourself, take it easy if you can, slow down, rest.
Vent away, that's what we're here for, right? :)
Lorenzo
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Thanks Lorenzo: I'm almost 6 months post op; I think 'when will this feeling end?'
At least the sad times are fewer & fewer.
Thanks again, Nancy
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Hi Nancy, hard to say, we're all so different... Mine lasted for about 8-10 months, with bigger and bigger intervals. The best part of it? One morning I woke up and literally found myself thinking 'I feel great! I have my energy back!! This is weird!!!' It felt great. Blues had gone too.
By the way, I have a blog that I may not have mentioned here before, where I wrote about my experience from start to now. www.mylump.org Some of it might be out of date, like the links, but the story in iteslf is valid. I did explain about my blues period in there. Might be a bit long to read it all though :)
Ciao, Lorenzo
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I had those times too, my worst was at about 9 months post-op and I've read of others who had it rough about that same time. After that, things seem to brighten. Hang in there..........
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thanks Pembo:
Believe it or not I was relieved to see people still feel this way 9 months out. Okay, gives me a time frame anyway.
I have to remeber to allow myself to get 'down in the dumps' sometimes, it's okay (funny, I can tell other people it's okay, but not myself).
Lorenzo: Thanks again - I looked quick at your site, will go back after work to read more.
Nancy
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Nancy,
You're welcome. Hang in there, things will get better! :)
Ciao, Lorenzo
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Thanks guys,
The blues are starting to pass (like the clouds in the sky.......) Nancy
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Glad to hear it! :)
Lorenzo
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Hi Nancyann - I can relate to how you are feeling. First year during my recovery I would get bouts of sudden saddness. I started to see a therapist who told me what I was feeling was normal after what my body/mind had been through. Lorenzo is right, I can liken it to post tramatic stress syndrome. The good news is that it does lessen over time. There are some days still, although infrequent, that I feel a little sad, sometimes I miss my old self :-\
I am finding lately that my anxoius feelings are related to hormones and the holidays (a not so lovely combination LOL)
hang in there.
cheryl
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Hey Nancy,
everyone here is right! :)
so... VENT, get pissed, feel however you want to feel... if the hormones are running amock, heck.. let them... if it's the time of year and the pressures that go with it, well, dang it... vent! :)
One MAJOR thing I have learned with all of my ailments (beyond my AN) and in life in general... no one... not one person, can deny me my feelings and my rights to them. Some days are good... some are not-so-good and dang it.. if I want to vent, i do it! I give you my good ears to vent and know that I send MAJOR huggles to you (and yes, everyone here!) to help you along.
So, Nancy... hang in there...let's pour a mug o' grog, let's kick back, relax, prop our feet up and just realize that it's good to be alive! :)
xoxoxoxo
Phyl, your cursed, cruise director! :)
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I will reply to this post too today because I can identify with this so much. The first time when I had surgery-17 years ago I was such a tough guy that nothing could knock me down. This did-(meaning surgery) I would even get anxiety attacks for no reason. After about a year it all went away. Now my 2nd time around I could not spent time with our family as usual for Thanksgiving and my wife's sister insists that we not miss their xmas eve dinner. They just do not realize that some days you just do not feel like it. It's like-come on and get better already. Sometime my only consolation is sleep-at least I feel normal then. We all need to be human and vent-especially on this site where people DO UNDERSTAND. Thanks for letting me vent also. Ron
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Venting is good! Three cheers for The Vent Club!
Just as long as people are prepared to admit it and talk about it. I found that I couldn't talk about my AN in general to friends and family, never mind the emotional side of things. 'Wah' y'a mean, you look normal!' Sounds familiar? Message boards are great for venting, we all know and listen and understand. Feel free, you all have my good ear! Just wish I had found this place sooner, although I did get great support from the message board of ANAC (Canadian AN).
Ciao a tutti, Lorenzo
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Hi again,
What does bother me alot (& I wish it didn't) is that I DON'T look normal, the facial paralysis thing is the worst, the dry mouth, no taste AN side, right eye that still needs lubricant a few times a day (at least that's better now - I use to put lubricant in at least 8-10 times/day), balance issues.... UUUGGGGHHHHH !
OKAY, THAT'S ENOUGH OF THAT - the pity party of one again.....
Where's my blue sky ?
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You know, there were times I wished I DIDN'T look normal! At least I could have escaped the incredulous stares of colleagues and friends, the sneaky remarques, the rolling of eyes and the colleagues that just ignored it all. I know, makes me sound like an idiot. I didn't have facial palsy or any of the visible effects. I'm glad I didn't, don't get me wrong. It's just, trying to convince somebody that you have something serious while looking like you always did, well, it's not easy to do, and it's not easy to take.
I went on sick leave recently for a few weeks due to noise exposure at work. I got some real smirks when I got back. Even two years later, it still goes on.
Taste thingN Ancy, it'll pass. It did for me. Balance, well the brain adjust for that with time.
Blue sky? Just there, over your head I hope, and probably right inside you too.
Ciao
Lorenzo
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If someone rolled their eyes at me there'd be hell to pay, & then some !!!!
Noise really bothers me too, especially when I 'have' to go to a large meeting (waste of time), & everyone's talking at once, can't handle restaurants anymore either.
Sometimes (like this morning), I felt like the light in me is going out, feel almost dead (tired).
I love that you wrote, Lorenzo, "Blue sky?..just look over your head.... & probably right inside you"
I know it will get better, I wasn't blessed with patience as a kid, am learning it as I go (& not too well I might add !!)
Nancy (Anunziata)
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Do I detect a fellow italian?? Anunziata? Sure sounds like it! :)
Ya, eye rolling gets the same response from me, in a verbal way. I tend to have a sharp tongue when needed.
By the way, one of the first things I did (and I was lucky I could) was to pull out of any kind of meetings for the first four months! Pointless and rather debilitating. First few I came out of I was thinking 'I'm loosing it, that's it. I have NO idea what went on in there, nor what language they spoke. (I know, sounds like a normal meeting and does not constitute a grave AN symptom per se). Nevertheless, when nothing registers and one feels lost at the simplest meeting, it's not a good sign.
Restaurants I haven't't given up yet. Love them too much. I just take a great pair of ear plugs and enjoy the food in silence! :)
Keep going, it'll get brighter.
Ciao
Lorenzo
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Yes, fortunately, Italian
Unfortunately, I've noticed there are quite a few of us of Italian decent with AN's (thing that make you go hmmmmmm).
Sharp tongue ? I'm a displaced New Yorker living in South Florida, I had to learn to CONTROL that sharp tongue when I moved down here (16 years & counting), sharp tongue, honest response ? no difference in the South.
Okay, on to happier days., Nancy
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you know the weirdest? i'm a graphic designer and i know of six others that also have ANs, two of them personal friends of mine here within this country (Ireland). Interestingly I'm the only italian in that bunch. Now THAT is a serious 'Hemmmmm' moment!
So South Florida must be like here (except you get sunshine, we get rain), control of the sharpness is required. As years go on, I tend to lose such control more and more, 22 years and counting too. Heck, we have THE excuse for letting it rip!
A presto, Lorenzo
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Nancyann - Best thing I did to lessen background noise in restaurants or other noisy environments as well as tone down the volume was to have a musicians ear plug made for me. It costs about $70.00 dollars and needs to be purchased from an audiologist. An impession is taken of the ear, so it is specifically desiged for you. You can purchase different filter sizes depending on what db level you want to reduce. I used to use the store bought foam plugs, but they distort sound, this plug does not. I attend alot of rock concerts (49 and never too old to rock) and this little plug has been a lifesaver.
Ciao to my fellow Italians! Listening to Dean Martin on my computer right now ;D
Cheryl
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wow, didn't know those existed! shall ask about them here and see what come sout of them.
Listening to Dalla right now, Pino Daniele later.
a presto, Lorenzo
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Although I haven't experienced depression, anxiety or just about any of the issues mentioned on this thread, I do sympathize with those who have. I can readily understand why any AN patient might have these issues, even when their surgical or radiation outcome is successful. As for 'looking normal' and thus having friends, family or co-workers question why you shouldn't be 'normal', that is mostly based on their ignorance and I'm afraid there is little you can do about it, except forgive them. I would never question how anyone else responds to a serious, life-threatening tumor and it's subsequent removal. That's absurd.
Supported by a loving wife and good friends, I consider myself blessed to have had an excellent surgical outcome and few real post-op difficulties, but I realize that we are individuals and cannot put restrictions on how others respond to this often life-changing medical crises we have all been confronted with, whether we're male or female, young or not-so-young, Americans, Europeans or some other nationality. AN is no respecter of persons. While there are myriad ways to approach this thing, the fact that some AN patients suffer from depression and anxiety, pre and post-op is hardly surprising. I only wish we could all avoid it.
nancyann: I trust that you are feeling better by now and will remain optimistic and confident as time rolls on. :) I hope this thread has helped a bit.
Jim[/color]
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Hi guys:
Hey Cheryl, I've got a musicians plug !!!!!! I didn't know I could use it in restaurants,
I knew for concerts, etc., ( so why not restaurants & meetings... the possibilities !!!! ).
I got one because I play piano (amateur) & was told you have to protect the good ear.
Thanks Jim, you have a way of putting things in perspective, helped me out before on posts.
Okay, I'm better. Thanks everyone, Nancy
Gotta keep an eye on those blue skies...
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Depression is a pain in the rear. It tends to sneak up on you at all of the wrong times. Mine comes when my mind is not occupied with other more pressing things, like when I am driving. With the season being what it is and my surgery scheduled just after the new year, the fear of not seeing another holiday brings me to tears. (Just my unfounded anxiety?)
I'm still pre-op. But is have been fighting this for several months when I never had it before. (I noticed the depresive episodes before my diagnosis)
Being able to vent to people that have been through similar situations is a help.
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Hi Nancy,
I have times of feeling blue also. I was thinking maybe it's because I haven't been able to truly smile for over a year now. Living with facial palsey can be challenging. Sometimes I get so frustrated because I can't blink my eye or smile or feel anything that touches my face. Reading these posts today helps. There are times that I need to be reminded of all of the good things around me. I'm finding that the times of feeling blue come and go and the times between the blue times does get longer and longer as time goes on. I'm happy that we have this group so we can come and vent.
Jean
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Sorry nancy for the blues your feeling. I.m 2 yrs post op, still get waves of the stuff. Kudos to everything that was posted here about this topic. Yes, three cheers for the Venting club. Like Ron said, were the only ones who "get it"
patti Ut
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even amongst ANers, there seems to be very little talk about emotional issues. Glad to see it here. Indeed, three cheers for the Venting Club!
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Hi there guys: Thanks so much for all your support. I thank you, my 'droop' thanks you !!
Jean: do you have total one sided facial paralysis like me ( sounds like it ), or have you gotten some movement back ?
Do you plan on having the hypoglossal anastamosis if you don't have movement ? Other surgery for facial reanimation ? Just curious.
I plan on having the hypoglossal if no improvement on the EMG in Jan.
Nancy
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Nancy - I hope you are feeling better today :-*
cheryl
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Hi Cheryl:
Yes doll baby, feeling much better today; in fact, felt so good this am, that I ran (figure of speech lol) over to neuro dept. since I hadn't heard from my doc's office re: EMG x2 days !!! My neurologist is backed up till May, & I need the EMG at least 1st week or 2nd week in Jan., so I went right to the office. They will talk to the dr., only he can 'add' me in. (the morons just ignored my telephone messages because I need it in Jan., & they'll only give appt. for May on, geez louise, so just 'ignore it ? NO WAY JOSE ).
So, how's your day going ? Thanks for all your support, Nancy.
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You sure SOUND better!! ;D Good for you!
Ciao, Lorenzo
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Oh yea Lorenzo:
I'm on a roll today !!! Anyone's 'butt' I can kick for you ? lol
Thanks for all your support too ! Couldn't have gotten thru yesterday without everyone's replies (well, I could have, but it would have been ALOT harder, that's why we're here !!! ) Nancy
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Ya Nancy, I can think of a few people, but you'd have to make your way over to this side of the pond to deliver the kick, unless you have a very looooooooooong leg.
Glad you're feeling better! :) Always glad to help. This place is wonderful, makes me laugh too!
Ciao, Lorenzo
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Nancy - Did a little butt kickin myself this morning, it's good to feel a little feisty ;D Had a phone chat last night with Phyl, (our lovely cruise director) and she always puts me in a good mood.
I saw on your x-mas wish list that you want to take dance lessons..me too!!! I am really interested in Ballroom, but lord help me on the twirls and spins LOL. I kep begging my husband to go with me, but he has no rhythm, (ever see Elaine dance on Seinfeld LOL)
Have a great day!!!
Cheryl
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Hi Nancy,
Glad to hear that you are feeling better today. I had total left-side facial paralysis for the first 3 months. I've ever so slowly gotten some movement back. Maybe 25-30%. It's hard for me to judge. I still don't have a real smile. I'm very close to a little smile. I can still walk around with food on my mouth without knowing that it's there. I think I have enough movement to not get the facial surgery. Does that help your blink? I still don't have that.
Jean
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Hi Jean,
Glad to hear from you. I'm also glad to hear you have approx. 30% movement back. Gives me hope, 'cept it's been almost 6 months for me & still no movement. I wouldn't get the facial surgery either if I had your results, I'd just keep praying !
Yesterday (against better judgement ), I had some Danish, & no one told me there were crumbs on my lips !! - walked around all day like that ! (jeez, I'm the first to tell people something's showing, etc.). well, anyway
Yes the gold weight helped tremendously, my eye was horrible before that, like I've said, would NOT have been able to go back to work without it, it was really bad (whew, glad that's over with).
Do you get facial EMGs at any intervals.
Take care Jean, Nancy
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Keep the faith on that facial paralysis recovery! I am 2.5 yrs post op and still recovering. I started facial therapy this summer and have improved from 31% to 62% in only 4 months.
As for sensation, that has been recovering slowly as well. I saw the biggest improvement after 18 months. My facial therapist said that they see sensation returning after 5 years! I definitely have more sensation now than a year ago.
I am a HUGE napkin user, a little obsessive even. Then I have to use the chapstick. I'm sure people around me think I have a chapstick fetish.
Facial paralysis and lack of sensation are the worst and have gotten me down many times. Then you cry and only ONE eye waters and you feel even worse. I can't even cry right. ;) But I will say I had a cold a few weeks ago and to only have one side of the nose running was kind of nice.
I highly recommend facial therapy! If anyone is near Pittsburgh, Todd at UPMC is wonderful!!!
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I LOVE YOU PEMBO,
heck, I LOVE EVERYONE ON THIS SITE !!!!!
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This topic hit home for me. It has got worse during the holidays for me. Its been six months and I seem to have a venting problem several times a week. Has anyone had more trouble during the holidays? I have also noticed the evening time is worse. My husband says I'm like clock work everynight around seven or eight o'clock at night. Kind of strange. I"m usually quite until that time then I just want to talk non-stop, and then sometimes end up in tears. Just wondered if anyone has experienced this. Still having trouble with my writting and spelling and sentence structure. I think just a lot of frustration, and just want someone to understand. Thanks for bringing up the topic. I guess I needed to vent.
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HI BB, yes, sounds familiar. I think when I got tired during those times I talked a lot more. I'm a very quiet person normally, so it was noticeable. In particular I talked about the An and all related to it. I think it's perfectly normal, why wouldn't we? It's a rather major thing we all went through, the stress alone would make itself felt that way. Frustration and lack of patience (spelling) were present. Had a tendency of flying off the handle very easily and for no reason, which is most unlike me. It's normal BB, and it will pass too.
As for the spelling and sentence structure and writing, ya, that is still here with me, but not quite as bad as a few months ago.
Hope you'll get back to your 'normal' self soon
Ciao, Lorenzo
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Although its painful I think the emotional struggles we go through has a healthy component. For me my post op difficulties were so over-the-top it took along time for me to grieve my losses. At this point, I'm dealing with the tailend of a cascade of physical problems. This gives me much hope, but still, I finally needed to confront the new me, which brought on sadness, anger, frustration, etc. I once read that it can be helpful to indulge and allow ourselves say 15 minutes per day to wallow and then move on. In my daily living situation I don't like for others to walk on egg shells or only see me as a person overshadowed by medical problems. The truth is we've all become stronger and know ourselves better through the high and lows of our experience. Recently, I got so tired of how this whole thing has affected our marriage that I decided to try scuba diving with my husband. He'd been a supper caregiver and it was a new start--the new me isn't all about what I can't do. I did it!
T
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I was reading the replies to this thread during my break at work and it just rang that proverbial bell in my head again. I work a 40 hour job so when I get home in the evening I am totally bushed. My wife asked me how my day was and was I okay. I told her "you know_ I am never okay". This thing has altered my life forever. One reason-with only one hearing ear left-all sound now is distorted-however I can still hear-just not that good. I cannot listen to music-radio etc. because I cannot make out the words. During football season I normally watched every football game their was (especially my beloved Pittsburg Steelers) yes I am a Steelers fan from Kansas- even though I have closed captioning on TV my interest has waned in that too-so am I normal. "Heck No". What scares me sometimes is the prospect of going completely deaf and how will I deal with that. Am I normal- "heck No". So each one of us has our own cross so to bear and issues to strive to be normal. This group is like a saviour to me-because then when relating with other's and their struggles-I feel normal and lucky to be alive. Ron
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Hi Ron:
Just a thought re: the one hearing ear. I know it's scary, I also am worried if something ever happens to that 1 good ear. My docs told me I have to protect that ear at all costs. Don't know if you already HAD diminished hearing on the 'good' side or not.
For what it's worth, since my good ear still has 100% hearing (Thank God), I bought what's called a 'musical plug' to use when I play piano, go to concerts/jazz clubs, etc. so the noise isn't so loud. I found out from Cheryl she uses it also for meetings, mall (I think) to lessen the noise (decibels), but I wonder if it would help the distortion so you can once again listen to music, watch (what's the name of that silly game - oh yea, football lol) football.  Don't know if it would be helpful for you or not, thought I'd put in the 2 cents.
Best wishes my friend, Nancy
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THANKS LORENZO FOR THE WORDS OF ADVICE. I GUESS WE CAN JUST NEVER HEAR IT ENOUGH. YOUR WORDS ARE HELPFUL AND GIVE ME HOPE THAT THIS WILL IMPROVE. BB
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Hi BB, things will improve, they do all the time as time goes on. It's just a slow process. Hang in there.
Ciao
Lorenzo
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I have had the same thing. I am only 3 months out but i get very overwhelmed with sadness. It always passes though! It's the holidays to. That adds extra stress. :)
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yeh i do that all the time. i get so overwhelmingly sad that i cant even function. i dont think its stictly hormones. i had some hormone havoc prior to my surgery bcause of menopause, but nothing like now, a year and a half after th fact. i think that tiptoeing through someones cranium affects the individual in more ways than is known. heck not much is known at all about brains and this an thing is no different.all i can say is when i get so blue and am crying my one good eye out i just try to cope by diverting my attention to something else until it passes. i also used to take antidepressants but they stopped helping so i dont anymore. i dont know i was never a depressed person until post surgery and i dont think depression is what it is now either. its a different sad. maybe we should give it a name.
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Regarding earplugs..................
Attended Christmas Eve Mass (another Italian here) the other night. Some of those high notes were a bit too screechy for me, so I stuck in an ear plug that I had bought in a sporting goods store for hunters. (So glad I inserted the earplug from my right pocket and not the dog biscuit from the other pocket.) It filtered out the screeching but allowed me to hear the music and softer voices.
Sometimes I wear an earplug in noisey restaurants, too. And, as I've mentioned before, in restaurants we request a corner table or one against a wall. Then I position myself with my back to the wall (like an outlaw) so the noise isn't coming from behind me (and I won't get shot by a rival outlaw).
Looking normal is an issue.......when you do not feel normal. My husband, who has been a great support to me, admits he forgets sometimes because "you look so normal"
No one really knows how any one else feels at any given time.
My kids (23, 19 and 15) recently revealed their true fears about my surgery, which was in August 2005.
"Mom, they drilled into your head! That's pretty bad," my youngest said. And all along I thought they thought I was loafing!
As for the emotional aspect of it.....................cry if you feel like it. But laugh, too. I do quite a bit of both.
If people don't like it, hey, I had a brain tumor.