No one asks anymore....

[Soundy]

A few months after my surgery my 15 year old Catahooula suddenly went deaf ... he was my buddy...put my kids on the bus ... they are grown men now ... he was at my side through a divorce .... then abandon me for my new husband ...then he put my girls on the bus when they started school ... before and then more so after surgery he was my ears ... when he went deaf I told my husband that he was going to die soon even though the vet said he was fine other than being deaf ... this week marks  the 2nd anniversary of his passing and I still look for him and miss him ... as for replacing him , that is impossible ... you may get a new dog someday and love it too ... but you can't replace a friend who has passed away anymore than you can replace a child ... we had other dogs and still do ... I really like Scruffy , a wire hair / wiener dog mix but loved CD (short for Compact Dog) ...he was my hairy 4 legged child


Sorry for your loss TP

[cecile k]

I have told my hubby and five boys that I  wish they could walk in my shoes for just one day....with the screaming tinnitus, balance issues, headaches, fatigue....they would understand a little more....sigh...but I carry on focusing on the positive and thank the Lord for new blessings each day.

All the best to all of you!

Hugs,
Cecile

[Soundy]

  We used to have a course we set up at big Scouting Events where thousands of people would be involved ... there were booths about everything from packing for a hike , CPR and  fire starting ….and then there were safety exhibits from ambulance service , fire departments and police ... Scout-O Rama was the biggest but has been cut out ...

anyway (wondering mind ) ... We had this booth we set up ... it involved a living room set ...and door way frames as if you were in a house ...one was marked bathroom , one kitchen and one outside ... the kitchen had mock up appliances and counters from cardboard and a plastic sink set in the counter top... bath room had a real commode and bathtub ..mock up sink ... was a monster to haul around ...

so we set up the thing and have our sign Handicap Awareness ... we had sets of crutches and wheel chairs , blind folds and ace wraps ... we would have Scouts , parents and anyone in attendance walk through the set up with a set of instructions ... Example: go to living room , get Call of The Wild off book shelf and take it back to chair  ... sit down and read light is low turn on lamp it was simple and they did assigned task easily 

simple enough right but then give them same instructions but they are in a wheel chair and can't get up....or they have an wrapped at side to simulate they only have one arm ... they can get the book but have to stretch more and wobble because they are off balance... they go to chair and find that after they have sat down the lamp is on the right ...(we always tied down right arm) some could twist and get to lamp ... some had to stand back up ...

we had scenarios where they were in wheelchairs and had to get to bathroom and onto toilet and couldn't use their legs ...or go to kitchen and get something from shelf or carry something and put in sink ...when on arm extension type crutches they could get around as long as they didn’t have to carry anything …


we blindfolded them and had them try to walk through with a cane or using hands to get from point A to point B ... but books were useless and when they were asked to switch on TV they could hear but not see it…and also realized that they video games at home that they played would be useless to them as they relied on their eyes to play  …

the boys discovered that when they were sent to bathroom blind and told they had to pretend to pee that they found the toilet easily but thought it through and realized that they may not hit target and would have to sit to complete task if it were real life and they didn‘t want to make a mess …and if wheel chair bound they would have to sit as they had non -working legs … had some break down and cry …wasn’t our goal to make kids cry but it may have taught them what it was like to be hemmed in by a disability … and maybe some tolerance toward that woman blocking their way in a store aisle struggling to get something off a shelf  … or the man blocking the entrance to McDonalds trying to maneuver his walker through , while holding te door open …

We had people that were blind and in wheel chairs and short of limbs that talked to them and told them things they could do to help… reaching things off shelves , opening doors , moving that little pebble that is hindering a wheel chair from moving …(you know , like the little pebble in Walmart that makes you crazy when it makes one of your cart wheels stop turning )


Sorry I am so long winded … just wish sometimes that I could make a set of things that I could put my family through to make tem see how I feel and cope …what it like to live in me …

I think I shared here when I washed pennies and made my husband put them in his mouth and taste the metal taste I live with daily … he didn’t keep them in his mouth long because they tasted bad … tried to get him to understand that I couldn’t spit out my tongue and have food taste right … I have to eat whether my food tastes bad mixed with the metal taste …I had no choice and he needed to under stand that …

I have also spun my girls scouts on swings wound up (no merry go rounds in any of our parks and playgrounds …evidently too dangerous …were removed about 5 years ago) …when they stopped spinning I had them try to walk straight lines … or stand with eyes closed without falling … none fell but they sure weren’t steady …

But I can’t smack people in the head with hammers to show them what it feels like when I bend to pick up something I drop… ( I am usually barefoot at home and use my toes to pick up things ) …I guess I could strap an alarm clock do their head with alarm blaring and make them wear it until battery wore out … then they would be free of the ringing that I can’t shed …

Fine dust in the eye to dry it out could injure them so that is out …maybe a fan on the face with eye held open not able to blink …that would show them how my dry eye feels for just as long as it took for their eye to make the tears they need to stay wet …I have single use packages of eye lubricating eye drops …they are in my pocket , by my bed , in the truck , at the nurses station at school … I have stashes everywhere

Yesterday we had high winds and tornadoes in the area …I was teaching at a BALOO course …Basic Adult Leader Outdoor Orientation … when I was done with my part I left instead of hanging out to chat with old friends …some I have worked with for 22 years and don‘t see as often as I did pre-surgery … I always enjoy the after session chats to catch up but was tired and just wanted to go home … we didn’t do outdoor cooking due to weather but we ran though foil pack cooking and assembled our hobo meals and cooked our meals in the church oven …while they cooked we learned to set tents up in the dining room after moving tables out of the way … safety and first aid parts were easy … no adjustments  …we were just not outside sitting on the ground …

When I left I wobbled all the way to the truck because wind makes me wobble …even when it is not that hard I wobble … If I cover hearing ear it is not as bad … but I was carrying stuff and couldn't cover ear ...the wind was high and walking about 40 feet or so wiped me out … I was huffing and puffing as if I had been running with just the effort of maintaining a fairly straight line to my truck and trying not to topple over …How do I make them feel this??  … it would take hurricane winds to knock my husband over …how can he relate that to light winds blowing past my ear making me dizzy …

High ceiling stores give me sensation that stuff is falling in on me …even being outside with tree overhead is bad sometimes … can’t make them feel this … in some situations I still wear a visor or cap with a bill to act as blinders to what is above me …when I hiked with my Girl Scouts Friday I had a bucket hat so I couldn't see above me ... this was great except for a few low bushes that had little branches that I let hit or brush my head since I didn't always see them ... but they were too small to do any damage ...just made me  little jumpy ...

I am doing real good I think … but there are always these little things that bother me , annoy me , cause pain and make me a little nuts at time … I go through waves of depression and go OCD at times trying to control my environment since I can’t control my body and what it does to me …I would say 80-85% of the time I am great … 10% I am just good and 5% I am not well at all … the trick is to not focus on the 5% of the time I am not doing good and embracing the times that I am OK … but sometimes I let that little bit get to me …

I have ran on tooooooo long so will quit … hope you all made some sense of my ramble …

[Jim Scott]

hope you all made some sense of my ramble …

Soundy ~

I sure did, and I would guess that most AN patients struggling with similar issues will, too. 

You made some excellent points about inducing empathy in other people, especially your family  However, I'll reiterate my opinion on this particular issue; that the majority of human beings cannot truly empathize with another person's physical/emotional deficits and subsequent struggles to function with that situation because we're basically self-centered (as a matter of survival) and everyone has to deal with something that may seem petty to us but is of importance to them in some way; like your teenager's failed romance or your neighbor's car wouldn't start this morning, your husband's boss is overworking him, that sort of thing that folks make a big deal over and will usually consider a lot more important - to them - than how you're feeling today, despite their love for you.  In functional families like yours, I don't believe their apparent lack of empathy is an indication of not caring but simply a priority issue, and an individual's immediate problems, whatever they may be - real or mostly imagined - will inevitably trump your very real and sometimes borderline-debilitating AN issues that many AN patients have to deal with on a daily basis.  That being the case, as I believe it is, one has to soldier through as best as one can, which, apparently, is exactly what you do, every day. 

However, doing so can be tiring as well as frustrating.  Your attempts to demonstrate to your family the kinds of things you have to deal with (I like the pennies in the mouth to demonstrate 'metallic taste') are both inventive and well-intentioned, but I would caution you not to expect your husband or children to completely understand what you have to endure every day and so, risk possibly building up resentment on your part for what seems to be a lack of empathy on their part.  They are really helpless to 'fix' any of your problems and, as I pointed out, have problems of their own to deal with.  I gather (from your posts) that you are a well-grounded, resilient woman who loves her family and that, more than anything, will get you through this, because, as I like to state, things won't always be this way.  I hasten to add, they'll get better.  Frankly, I think you're doing great, and I see that you agree with that assessment.  However, no one is 'great' 100% of the time and occasionally, we all need to vent a bit..or ramble.  I do that quite often.  In fact, I've just done it with this post.    I trust you'll not be bored by it - and I wish you better days ahead.

Jim

[nanramone]

cin605 - your post is funny though it isn't meant to be, but proves a point - if we don't hang our heads, if we do our best in life to think positively and look our best, people will do what's most comfortable for them and say, "hey! You look great!" We would hope a physician wouldn't do this, but he/she is human I guess...

I lost my job last September due to numerous on the job injuries. I recall my second visit to a particular worker's comp approved NP. I took special care to dress nicely as I always did when off work, sice scrubs were required at work and I got tired of wearing boring clothing. So with my knee wrapped because of a ruptured bursa, my elbow wrapped because of tendinitis, and limping slightly because of both the knee and foot tendinitis, I hobbled into her office, cheery, smiling, wearing a pretty skirt though in lots of pain.

she said, "well, YOU look like you have nothing wrong with you!!!"

And she released me back to work with no restrictions! I argued with her to no avail, she being so apparently taken with the healthy look I was sporting. I suppose I should have done what you did, and downplayed my good spirits. I might have been granted some time off work if I had neglected to take a shower and left my long hair in a tangled mess!

Regarding AN - After finding out about this thing, I left town for a week, then returned and went about the business of researching the problem. I will say that three weeks ago I might have been clinically acutely depressed, but having made a treatment decision, I've rebounded nicely and am going on with my life.

bdsgurl - Try to find your strength within...That's all any of us can do, whether our problems are related to ruptured knee bursas, unsatisfying relationships with people, or unexpected brain tumors. We need to look inward and upward and stay positive, and remember that each day, we can find at least one thing to be grateful for. And by all means, come here or another safe place to unload when you feel down...

Sort of a ramble here, I guess...I believe we are all OK.

Nancy

[Soundy]

Jim .... your post never bore me ... and most days are good ...

I think that a part of my problem is that I have been actively been taking care of people due to family situation since I was 10-11 years old ... had a friend tell me that I needed to take care of me instead of everyone else ... I soldier on because for most of my life that is what I have done and know no other way ...as a result people don't know that I feel like the walking dead some days ... I just do what I do til I drop then the know ...


and I know I can't make my family feel what I feel and the little bit I can demonstrate to them is soon forgot ... but at same time I am expected by them to know they are depressed or feel bad and care for them and make things better ... and I do as best as I am able and don't mind but sometimes I want that too ...

my husband is guilty of 2 things

1) not getting it and asking me to do something  (sort calves for instance ) that used to be just par for the course and is now it is a major task for me ... 5-600 pound calves flying at you is scary when you wobble ...and 1200 pound cows even more so ... I use 2 sticks instead of one now ... that way I can prod with one and use one to catch balance if need be ...and in good moments prod with both ... reflexes are not as fast as they were pre-surgery and speed and agility are a must working with livestock ...we have no real trouble makers but still , they ar big animals and have minds of their own ... but if I have to do it I do ...

or

2) over doing the taking care of me if he catches on that I have reached the end of my rope ... or thinking that I should not do something becasue of AN aftershocks ... for instance ... he doesn't think I should skate , use my jigsaw or band saw , drive my mom to appointments that carry me in to the night many times ...he thinks I should drop scouts and do less volunteer work and stay home taking it easy ...

so what do I do should I sit at home on my couch eating bon bons and reading or watch TV or soldier on I have no choice but go on ... he doesn't see that volunteering in the absence of employment that I lost after surgery keeps me in better shape mentally ... sure it wears me out sometimes and takes up time I could be doing something for myself (read ,relax , eat bon bons , go to spa  ) ... but it is better than sitting at home by myself (most of the time ) and thinking about what I can't do ...

so I soildier on ...crash on occasion and get up and go again ... it is what most everyone dealing with life altering illnesses or changes have to do ... I don't think of myself as ill which is what some friends and family think , but as life altered

PS .... I have yet to figure out why Bo thinks working with my jigsaw is more dangerous than standing in front of animals that could crush me with a cut off broom handle to stop them ...a mystery he has yet to answer for me 

[CHD63]

Maybe I'm missing something here ...... sorting 500 calves is OK, but doing scouts and volunteering is too much ..... 

Clarice

[Jim Scott]

Soundy ~

I 'm glad I don't bore you.  

From your response, I think there may be a bit of a communication problem between you and your husband, so you guys need to talk.  Well, actually, you need to talk and he needs to listen...really listen.  You seem to understand your limitations and your desire to be active within those limitations quite well but you seem to be the only family member that does.  That is problematic and I can see why Bo seems to be blind to what is harder for you than it was before your AN/surgery and yet, over-solicitous when he perceives that you're physically not up to something at the moment.   I suspect that he thinks you should abandon your volunteer work because he may assume that you could handle the calf sorting chore and other things that are important to running the farm if you just didn't 'waste' your strength on volunteer activities.  Because post-op AN issues are often indiscernible to others it makes understanding complicated to explain to anyone that hasn't dealt with an acoustic neuroma.  Frankly, even with all good intentions toward you, your husband may never 'get it' in a way that would substantially alter his expectations for you.  Still, I hope you'll try to tell him (in a non-accusatory way, of course) what you've so honestly stated on this thread and perhaps it will help.  The concept of you as a soldier slogging onward every day despite physical problems and an intractable lack of understanding of those around you doesn't seem to be something that can be beneficial for you - or them.

I'm glad you don't think of yourself as ill - because you're not.  I'm also pleased to read that most of your days are good.  I hope more of them are.  

Jim        

[Soundy]

Clarice ... that is 500 pound calves ... I think 500 calves would cause me to go belly up  ...we only have about 75 animals cows and calves together and that is plenty ... I know what you meant though ... seems that calf sorting would be more detrimental than volunteering too much ... at least if someone at school knocks me down they are probably going to help me up not step on me

Jim ... I know there is a communication break down ... and I have not been able to fix it ...I tell him I am uncomfortable with sorting and he says it won't take long and he will watch out for me and instead of refusing to go help him  , I go ...kind of have to as the other choice is my girls helping him ... they herd animals out of fields into holding pens but I will not let them in the sorting area... too closed in and it is the easiest place to get hurt ...

part I think is circumstances and he is in some denial ... he lost his sister in March before my surgery and then his October his dad lost leg from knee down to diabetes complications ... he wants me OK and if he treats me as if things are OK they are in his mind ... and it doesn't help that I generally charge forward ...

something that came to mind coming home from library this afternoon after my last post was that his dad lost his leg from knee down and got a new one shortly there after ... he wears work boots and you would never know he has an artificial leg ... he gets around probably better than I do ... we both wobble on uneven ground ... but Bo watches out for him and tells him he can't help sort or vaccinate anymore because of the leg ... he can see the leg gone when his dad takes it off to rest the stump ....

Bo may be a visual learner ... he can't see what is going on with me until I do hit a crash point ...it is invisible to him ...maybe like cin605 I should make things visible to him ... don't get dressed all day long on a Saturday I don't have to go anywhere just lay around in nightgown ...or shave the side of my head so he can see the scar as a reminder ...we need to find a middle ground in his interpretation of what defines a disability and how he should act toward me ...the either ignoring that anything is wrong or coddling me with nothing in between gets to me ... and he is a great guy that does little things like cooking when I am semi comatose because I am worn out ...and he has taken over the weekly skate trip with girls because I can only tolerate a few trips as the round and round part bothers me ... but I go sometimes because the round and round without falling makes me feel alive ( I know that is contradictory ) … he hangs the towels on line because the basket is too heavy for me to carry up and down steps safely … so he knows on some level that are problems but sometimes goes into denial … I think to protect himself from knowing the extent …

AN issues for me are minor … they are what bothers me the most but to be truthful  Lupus complications will probably get me or at shorten my life …already have kidney issues going on , and get fluid in my lungs every 6 weeks or so , skin problems are getting worse

I think Bo is scared … but hiding his head in the sand that there are problems doesn’t help any of us and makes me resentful … and I keep this quiet …I worry more about the girls … Bo thinks I will live forever and was mad that I put things in order before my surgery just in case … I want to live to get the youngest out of high school …longer would be nice be nice … but if I go before then I need to know he isn’t going to fall apart because they will need him

Bo never dated until we started dating …he was raised to take care of his sister who was born with CP and it was drummed into him that was his job …be her caretaker …why he asked me out the first time is still a mystery … he thinks more of me than I am worth …says he is nothing without me …he is a lot more than that …

Getting lost in thought here so will end it …

Thank you bdsgurl for starting this thread  … it has spurred some thinking and I have some ideas how I can address some things going on here and maybe make some things better

[saralynn143]

Soundy, Jim already eloquently stated the points I was going to make, about communication and the possible reason that Bo wants you to cut back on volunteering.

Something else struck me in your subsequent post - where you say he thinks more of you than he is worth and then go on to say he is so much more than he thinks . . . a counselor once told me that in the healthiest relationships each party thinks they are getting the best of the bargain, so while you and Bo may need to work on some things (and don't we all), the relationship itself is strong.

I have a friend with Lupus, she goes through periods where her symptoms flare as yours seem to be doing, followed by lengthy periods of remission. I'm praying that you will go into a remission too.

Sara

[moe]

I can relate to everything on this thread, so don't have much to add, except to reiterate that:

People will NEVER "get it" unless they get an AN, have brain surgery  and experience SSD,balance,tinnitus,facial paralysis, light headedness issues (I'm speaking of myself )

Soundy,
You sound VERY active- too active. I get light headed just reading what you do! How long till you can downsize on the farm? I can totally understand the importance of volunteering. It helps to channel those intense emotions/health nuances and help others. It is not "all about you" when you volunteer.

Kind of like me and working part time. I  get to professionally take care of other's health issues,(home health nurse) though I am finding since my surgery that I am having less empathy for those who have all these diseases that could be prevented if they had taken better care of themselves while they were younger. I may have to change my work venue, I don't know......

They said my tumor had been in there 5-10 years too long, and it would have killed me in another 5-10 years.
How can that be? My symptoms were so slow and insidious for who knows how many years (25?) I ignored these subtle symptoms, and now I get to live with the "new me".  Others have these sudden onset symptoms, get the diagnoses, and get it taken care of...

Oh yea, and they do not "get" what the "new me" means.

Ah well, remember give yourself 5 years for full recovery from brain trauma/surgery.

I have found myself rambling! Hang in there y'all, take care of yourself, make it a priority.
OK I'm gonna go and try to do some balance stuff now
Maureen

[cin605]

My head is heavy just thinking about the cows........I do not think i would make a walk hrough a barn w/o staggering out the other side...The noise alone would make me cringe and annoyed...kind of like an instant anxiety attack or like the mall at christmas.
You are very brave.

[Soundy]

Sara ...

most days Bo would put me in a padded room to keep me safe and I can't do that ... as for time volunteering ... it is what keeps me sane
even though sometimes it drives me crazy too ...

I have had minor lupus bumps since surgery but this is my first real flare... it wears on me as just like the AN fall out I can't get away from it


Moe ...

I have been told I am too active ... but as stated above I have to keep moving ...it is both good and bad for me , I know ...but lean toward being more good than bad

as for downsizing the farm ... the economy will probably get us if the cows don't ... with feed and fuel we are barely making enough profit for it to be worth fooling with ... but as I have my Scouts and school , Bo has his farm ... if he could afford to he would quit the electric system and farm full time ... don't have enough land for that to feed us all ... another fear of mine is having to sell off land to take care of medical things ... Bo is the 4th generation on this place ...would kill him to lose it ..if we had to sell the cows tomorrow (we would if we couldn't care for them) Bo would keep at least 5 or 6 to keep him out of trouble


cin605...

the calves bawling when we wean them off to sell make a terrible racket and drive me instantly bonkers .... have to walk around with a finger in hearing ear  ...but I can take them over a mall any day

[petgroomer]

I, like the rest of the reply's know exactly where you are coming from.  It has been a year now since I was diagnosed but with one exception, they cannot operate as it is too big.  They are reluctant to do CK on me because of the size and location too near my other nerves that they are afraid even CK will do more damage than good.  So here I sit.  Still looking normal.  Still my same crazy fun self. 
Seems to eveyone that it is all behind me and that I must be better now.  It REALLY is hard to look at someone and tell them that I am not feeling well or I have such pressure... when really, I do look fine and still act crazy.  So ultimately, I gave up.  I have put it all behind me and even act myself like it is in the past.  I don't mention it and if someone out of the blue says "Rhonda, I didn't know how to ask you, but what's going on with your tumour?".... I just say "Ahhhh, it's in the past now, nothing they can do so onward with my life I go".
It has been so uncomprehendable to anyone I know that NOTHING can be done for me.  So it's almost like nothing is wrong with me then.
I will tell you, I have a blog on a www.vagalschwannoma.com website that I write on through the week.  Lets out my thoughts.  I have had soooo many people contact me through this and I am finding a vagal schwannoma isn't THAT rare as docs say it is... WE ARE OUT THERE
My thing is, I am helping others while still being able to vent myself to the world and those who care to read it, can. 
Make yourself an online blog, that you can write on daily, then just drop hints to family and friends that you have this and see if anyone pops on it to see what REALLY is going on in your head.  No one comments my blogs, but they do email me.  I have met at least 16 other people around the world who have a vagal schwannoma.. LOL.. who am I kidding, it still IS rare...
But one thing is for sure, they ALL thank me for the site and for my blog as it helps them cope with their own feelings.
Sincerely,
Rhonda

[arkansasfarmgirl]

TP,
I so understand about the dog.  I had a german shepherd, Rena, who was my constant companion for 11 years, until I lost her to cancer in 2007.  She had been my best friend through so much, good times and bad.  She went to work with me, she went with me to barrel races and rodeos...we were together 24/7.  Your post made me cry, because I still miss her a lot.  I have a new shepherd and she's great and has done wonders to fill the hole in my life, but she'll never be able to fill the hole in my heart.

Hugs to you,
Vonda