ANA Discussion Forum
Post-Treatment => Cognitive/Emotional Issues => Topic started by: bdsgurl on April 20, 2010, 12:42:01 pm
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Its been a little over a year since my AN Translab. Right at three weeks post op, i took back over as primary caregiver for my three little girls, ages 6,4, 6 months. Its been a big adjustment learning how to take care of their needs while being SSD, compromised energy level, and pain. I am so grateful that my recovery hasnt had anymore serious complications after the blood clot i had taken care off. So I do thank God for that. It just sometimes makes me sad that when i have a bad day or am down and sad about how life has changed, nobody attributes it to my AN. Like for them its a done deal , over with, surgery is over, recovery is over, and the aftermath, well they just dont see it. So no one even asks me how im feeling anymore, or how im doing with recovery. How the headaches and the pain affect my parenting. Even my husband and parents never mention it anymore. Maybe its easier for them to put it behind them, but for me its still there everyday and it would feel good to have someone else notice that i still struggle.
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There are alot of people here who understand. Most of all there`s a higher power who knows what`s going on. Prayers and best wishes always, Mickey
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I know exactly how you feel and I offer my sympathy.
I hardly know how to deal with this issue myself, but it may be a good idea to express your feelings to your close surroundings.
Otherwise, this forum is a perfect place to ventilate.
Cheer up.
Kenneth
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oh, how I can relate.... too many ailments and many meet me face to face, with all of my ailments, and many have no clue from what ails I suffer...... and think I'm just fine. If it wasn't for my cane (used for non-AN related issues), peeps would have no clue for all I suffer on the "inside" that outwardly is not reflected.
I have noted this in the forums in the past... will note here now in the hopes this helps.
My sister, upon one of my first ails diagnoses, gave me this book... and it was SOOOO on the money! In the case of AN'ers.... living with a "hidden" disability (ie: hearing loss/SSD, vertigo, etc), this book gives terrific guidance. Now, if we could only get our loved ones to read it to help them understand what we endure.
Hope this info helps... it may be worth a peek. Hang in there... we truly do understand.
Phyl
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http://www.amazon.com/Living-Well-Hidden-Disability-Transcending/dp/1572241322
Living Well With a Hidden Disability: Transcending Doubt and Shame and Reclaiming Your Life (Paperback)
Authors: Stacy Taylor, Robert Epstein
Product Description
A startling number of Americans who look healthy and function normally suffer from recurring symptoms not visible to the eye. Their conditions may limit their enjoyment of life, and like the physically disabled, they are forced to deal with feelings ranging from anxiety and shame to anger and self-pity. Living Well with a Hidden Disability reassures readers that they aren't alone. With thoughtful, frank writing and useful worksheets, the authors offer strategies for dealing with pain and confusing emotions. They cover the effect of disabilities on everyday life, creating a valuable resource for adults who desire complete, productive lives.
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Thanks Phyl for that site.
And bdsgurl,
I'm sure there are hundreds of people out there who share your sentiments.
Unfortunately, this surgery WAS a life changing event and most people have symptoms that affect their life. It is a matter of readjusting the expectations of yourself
BUT in your case, you have 3 little children who need their mommy, 24/7 and I cannot imagine how hard that is.
I was going a little crazy at that time of parenting, and that was without brain surgery!(also three kids, same age difference). My AN was there, I just didn't know it, so I remember feeling fatigued and insisting on daily naps when my kids napped! Or "OKAY mommy needs a time out now" I would bring the baby upstairs with me and leave the two preschoolers downstairs with the toys or tv.
Don't know what your situation is with help from family or friends. My hubby is military, so it was just me. I would send the kids to day care when they were real small, even if I didn't have to work.(I only worked very part time) And have the half day for myself (cheaper than therapy )
See what you can muster up. The taking care of yourself part of life will get you through this. Daily naps/rests/music on CD, or even acupuncture if you can afford it to help with energy and all that.
I always have said-good thing I didn't have this surgery when the kids were smaller- actually I should have. But I know that the symptoms do affect every day life.
My kids are now 22, 20, almost 17.
Hang in there, I hope you are able to get a reprieve at least from the mommy duties and take care of yourself. I know it was worth every penny of child care for me.
Maureen
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Annalisa ~
Your frustration is, as the previous posts indicate, all too common with AN patients and others with 'hidden' physical deficits. Although my post-surgical/radiation issues are relatively few and minor, my wife suffers from Fibromyalgia which is 'invisible', nerve pain from long-term spinal problems (she's had 3 spinal surgeries), Crohn's disease as well as other issues she has to deal with on a daily basis. She works around her limitations and I help out around the house as much as possible, of course, which is easier now that I'm retired. This allows her to led a relatively normal life - and she rarely complains. However, her situation and my own experience as an an AN patient has given me more understanding and definitely more compassion toward those who 'suffer in silence' from conditions that are invisible to others.
It's quite understandable that you'd like a bit more understanding from your husband and family but, alas, that is often hard to find for many post-op AN patients. My theory is that, with some exceptions, most people have a finite amount of compassion and concern for others physical problems. This seems to be especially true for spouses and immediate families of post-op AN patients. This is why the standard, expected response when we're greeted with "How are you?" is "Fine". Illness and pain are not something most people really want to hear much about and of course, most adults have problems to deal with that are important to them, making their understanding of your physical problems lower on their priority list, as it were.
I would suggest that you try to let your husband and family know (in a non-accusatory manner) that you're still struggling with post-op deficits and that you aren't 100% recovered. Using the term 'brain surgery' often helps the otherwise apathetic family member sit up and recognize that you didn't have an appendectomy or your gall bladder removed, but a benign tumor in a very difficult-to-access space in a crucial area of your skull and that the ramifications of that surgery are long-lasting. The point is that you're struggling with SSD and other deficits that affect you in many ways and just because you aren't in a wheelchair or bedridden doesn't mean that you're perfectly fine and that the AN surgery has no bearing on your life, today. If you can relate this in a non-emotional but cogent manner, it might help. Of course, everyone is different and this approach might avail you nothing but it seems as if your spouse and family are oblivious to your physical issues and the emotional toll they take and I have to believe that, were they to face reality (through you) they might cut you a bit more slack and offer more help and/or understanding. Perhaps not, but I can't see the harm in at least letting them know that you're struggling both physically and emotionally and could use their help.
Meanwhile, know that most of the folks using these forums know exactly what you're dealing with. You'll be in the thoughts and prayers of many - because we care about you.
Jim
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Bdsgurl,
There are MANY of us, myself included, who can relate to this. I have regular conversations with another AN surgery survivor about this very topic.. It's extremely difficult to deal with the fact that everyone seems to have gone on with their lives and has expected us to do the same. Out of sight, out of mind..
I don't have any real answers for you, as I'm dealing with similar type issues. Just know that you're not alone. There are MANY of us who get what you're saying and are dealing with the same things.
Regards,
Brian
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I wish I had a quarter for every time someone says, "You look fine, I don't understand why you don't just get on with your life." I would be a fairly rich woman. My family gets very frustrated with me because as I have told them many times that I have sold my Wonder Woman cape and boots on eBay. They still expect me to be the me of five years ago. I am not and won't be again the person I was prior to the AN surgery. At times I feel really bad that I can't be the same kind of grandma to my five and six year grand sons that I was to my 18 and 17 year old grand daughters. My youngest daughter, who is expecting her first child, says, she appreciates the patience I have now and the thoughtfulness. She hopes that her daughter will learn from that. I am done making excuses and apologies. I am who I am and I kind of like me. You will too and stand firm with your family and friends...teach them acceptance.
Brenda
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Annalisa .....
You have already received some very appropriate and valuable replies ..... I hope you can take their thoughts and apply them to your own situation.
Some time ago I figured out that my husband really had no way to know when I was feeling well or poorly unless I told him ..... because outwardly I look the same for both ways. Therefore I try not to assume he knows when I am having a bad day.
Also, look at it this way, if you had been in a terrible car accident with a traumatic brain injury, people would not expect you to be fully recovered in three weeks. Well, you had a traumatic brain injury in the form of invasive brain surgery ..... much the same. Someone on this forum (Donnalynn???) has a pin that says "I survived brain surgery, what's your excuse?" Not sure I could actually wear something saying that, but used with humor, it might help.
Those of us who had surgery for our ANs can all identify with what you are feeling.
Thoughts and prayers. Clarice
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Oh gosh can I relate to what everyone has posted. When I leave the house for an appointment or to go shopping or have company over I put a lot of time and effort into getting myself together so I appear decent /normal. Around the house it's a different story. No make up, comfy old clothes, hair is just brushed when I wake up and teeth of course but there is no fussing.
I will never be the same person I was prior to Sept 2006. I think my husband has the hardest time of anyone excepting it. One day last week my son Nicholas was frustrated with me and I just started to cry. I had a massive headache, the leftside of my body was pins and needles, my face was doing the hemifacial spasms thing and I was hitting redial every five minutes because the line was busy and I needed to move up my appointment with the neurologist. Nicholas wanted to know what was wrong with me, once I started crying I couldn't stop. All I could say is I don't feel good and no one in this house gets it. He dragged me into his arms, held me tight and kissed me over and over. He kept saying Ma it's okay and he held me until all my crying stopped. I was touched because Nicholas is my macho guy but he was there when I needed comfort.
It is tough some days, a lot of days no doubt. I really think people are afraid to ask because they do not know how to react especially if you have a mini melt down like I did. I'm normally withdraw, but that day I guess I needed to release. People around me have remarked that I have changed. I've gone from being very upbeat and boisterous to being withdrawn and meek if you can believe it. I think people do not know how to react to the change because basically on the outside nothing seems wrong. Who knows? My girlfriend who is terminal with lung cancer told me a lot of her friends have stopped calling since her diagnoses. It must be human nature bizarre as it is.
Anne Marie
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I will join the crowd with how this whole AN business has affected us. I look fine most of the time and to get thru that it has affected me day in and day out seems futile some of the time. I think that some of the time my family thinks I am putting it on just for attention. NOT!!! People don't seem to understand what having no balance nerves mean. I do do well for having none but doing well still means having balance issues. I am hoping my husband has some clue now with his broken hip but he is trying to overdo in my opinion now. I tell him to ask his PT person questions since he doesn't seem to want to listen to my view. I really do understand though that I well know what it feels like to be some time past surgery and think things should be better than they are. Life goes on and one just has to do the best they can!
Cheryl R
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I, too, have struggled so much with this issue. It's been very hard to cope with feeling so sick and take care of a family. when I had my surgeries, my kids were 3,2, and 2 mos. they have grown up and i brought 2 more children into a world where their mother is not 100% healthy. my husband has resented my symptoms and deficits in the past, but is just now after 9 years having compassion for me at times. he didn't marry a sick person, he has had to adjust to having a different wife. i have to gently remind him that i dont feel well. let your husband read about the effects of cranial nerve damage and what happens to you when you are dizzy and trying to maintain balance with your visual system. how tired it makes you, how its difficult to concentrate b/c ur bOdy is just trying to stand upright. look up the links on here about brain tumor fatigue, damage to vestibnular system and more. i had to tell him over and over. i also dont even like talking to people anymore. they don't understand & i don't want pity.
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DonnaLynn
I love that idea of the card. Think I will steal the idea fromm you. In all honesty I think I have adjusted well...I point it out if necessary that I had/still have a brain tumor. Because I deal with 16 yr olds on a daily basis, when I first meet them in class, I explain to them why I somtimes stagger, slur my words, cant remember how to spell simple words, and so on.... And because I'm speaking to them on an adult level, they (well most) respect me for it.
As for family, I now keep a visual reminder of my hidden disability,....my Baha...I keep my hair short and have no qualms about explaining it to strangers who ask.
I express myself when I'm having an off day...
On this day again, I thank my lucky stars for my recovery. if it wasnt for the SSD and the walking like a drunk at times, I would be 100% back to the old me. I'm sure as heck aint complaining...Expect for the being tired....I know you all understand when I say I'm not physically tired but mentally tired....
JO
I had one lady state: 'You have a brain tumor? You look normal!' Makes me wonder how 'we' people with brain tumors are suppose to look?????
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Honestly this is hard for pre op An'ers to read. In most surgeries things get better, life is better. Of course I am anxious about my surgery next month and part of me just wants to cancel the whole thing and take my chances but being a grown up I have to face this, and I will.
Part of friends and family not seeming sympathetic is the fact that they love you and want you to be normal. I had spinal surgery 20 years ago and suffer bouts of serious back pain and frankly my family is tired of hearing it. I refuse to suffer in silence so I make sure they know but really don't expect much from them. I deal with it the best I can and am very grateful for good days, which are more the norm.
Thanks Phyl for posting the name of the book, it sounds like it could be a lot of help. I will certainly get it and read it and let you know how it helps.
Just for the record, I look very normal and function very normal and look darn good for a 57 year old "Grandma" ;D
Sue in Michigan
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Sue .....
You bring up a very valid point that this thread sounds discouraging for AN patients awaiting treatment. Hopefully the value in this is that any time someone has a serious illness/condition be it an acoustic neuroma or cancer or heart condition or whatever, family members sometimes do not know how to handle the interaction with the patient. Some of us would rather people just not say anything about it and act like we are totally recovered and back to "normal," and some of us need some TLC when days are not going so smoothly. This makes it very difficult for caregivers/family members and even acquaintances to know which way is best.
Other threads have been started about how many of us look perfectly normal and therefore others perceive us as just the same as we were before, when we are not.
My best thoughts and prayers for your upcoming surgery.
Clarice
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I'm awaiting treatment and am grateful for this thread. It is helpful to know the down side, even while remaining optimistic.
I'm beginning to see this as just one more challenge in life; we live, we grow..and we adjust to change.
Let's all find at least one thing to be grateful for today! It's good medicine for the soul!
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http://www.amazon.com/Living-Well-Hidden-Disability-Transcending/dp/1572241322
Living Well With a Hidden Disability: Transcending Doubt and Shame and Reclaiming Your Life (Paperback)
Authors: Stacy Taylor, Robert Epstein
Thanks for that link. Just ordered a copy through the library as per your recommendation.
DHM
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http://www.amazon.com/Living-Well-Hidden-Disability-Transcending/dp/1572241322
Living Well With a Hidden Disability: Transcending Doubt and Shame and Reclaiming Your Life (Paperback)
Authors: Stacy Taylor, Robert Epstein
Thanks for that link. Just ordered a copy through the library as per your recommendation.
DHM
Me too thanks Phyl!
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I was thinking about changing my name. Then when people address me, they have to realize I'm not the old me. I just can't decide what to name myself.
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possible new names: Ms Tumor Begone
Mr. Imnot Drunk
Ms Ino Blink
Mrs Wonky Head
;D ;D ;D
Jo
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When frustrated I have told my kids that I am going to change my name and not tell them what I have changed it to...
can't really add much that hasn't been said ... I get the same you look fine even when AN surgical symptoms or lupus symptoms are kicking my rear end ...ANs and lupus are largely invisible ... except for brain wrecks headaches , most things are brushed off as me being moody , getting older or any other number of reasons people come up with ... everyone knows when I am wrecking ...eyes glassy , stiff neck movement... when people talk to me I tend to manage a slight No shake of my head ...I sometimes feel like I should carry a mask with a sad face to pop on when I feel bad ... I may need to get me some of those cards printed up ...
what is funny is I also get irritated when people attribute any and everything I mis-do to the AN surgery ... or use it as an excuse why I wouldn't do something
I may be un-pleaseable :)
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I will go for Mr. Imnot Drunk ;D
Seriously though, we have to make some jokes about it once in a while. Otherwise, it would be unbearable.
Kenneth
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chuckle, chuckle!!!
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I totally relate to what everyone is saying. I have not visited here lately. I've had a very difficult last several months.
Back in December my knees went bad, I guess all my years of karate caught up with me. I had knee surgery in February on one of my knees and my dr surprised me by turning a simple procedure into me having to use crutches for 6 weeks (I work out of my house and live in a 2 story home-so not fun). Well I was a big grouch during that time as I scooted my butt up and down the stairs several times daily. Then my husband lost his job in mid March (he got a new one a few weeks later, thank you God but what an adjustment and sad time as he was with this company for 20 years) then our sweet german shepherd died in my arms a few weeks ago of heart failure. She was my co-worker, she sat at my feet every day for the last 10.5 years. I have not been able to cry since my brain tumor was removed in 2006. I have facial paralysis and no tears, well I cried for the first time and tears actually flowed from my bad eye. My dear Steffi (my shepherd) was the sweetest and smartest dog and it was just a horrible day. I lost my voice for about 5 days after she died, I guess I cried too hard. Now it has been two weeks and I find that I am sad.
I have never been a sad person but I find with my disabilities (SSD, facial paralysis), life changing things (bad knees, losing jobs) and then losing something special in your life, like your dog, it has been difficult. I am very blessed that I have my family, friends and a great church but you can't explain when you are sad and no one really understands why.
I appreciate this site to express my thoughts! I hope all the sad folks out there will find some joy this week!
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oh TP
I feel your saddness at the lost of you shephard. I to lost mine at the age of 13 yrs...she was my dearest companion and the last of my bloodlines. then two yrs ago, I lost my other best friend, a coonhound at the age of 12 yrs due to a tumor and liver failure. To this day, I have not been able to replace them.
JO
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TP
I'm so sorry for your loss, losing a pet is really like losing a member of the family. They are so special to us. And ya know when it rains it really pours. I can totally relate, 2008 the year I was diagnosed was not a great year for our family, due to a whole laundry list of things.
I think once the dust settles and things begin to get back on track, but that on top of our deficits it can make life tough to handle sometimes.
Take care and God Bless,
Liz
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Chin Up Kids 2010 is going to be a better year. We've lost many a pet to illness.(My mom raises chocolate labs) and we feel each loss exquisitely. But...we accept that we loved them, they loved us, and we had a great time together.
re Ms. Imnotdrunk
that is my favourite since I walk like a drunken sailor a lot. Just this week I went for a run, and at the 2.5 k mark I turned (well staggered around in a half circle) to head back. It was really quite entertaining...though I'm glad no one was looking...
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Hey Nikki with you being a cop it is comical really! Sorry I'm in a really silly place today which is good!!
I'd fail ALL sobriety tests I hope you realize that and I'm not a drinker, never was ::)
Anne Marie
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Oh I know..I've said many a time in the past year...I'd arrest me for the way I walk :D
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I got sick of even the doctor saying wow,you look great for being 6 months out or 1 year out and i am there becouse of neck and head spasms......finally one day i went for an appointment and made a point not to do my hair and make-up and dress nice...... I said..o.k. look at me this is how i feel!it was funy to see the look on the doc's face when i walked in ....he listened really well to my compliants and adressed all of them w/o saying well...you look great. ;D
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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
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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
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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 …
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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
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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
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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 :)
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Maybe I'm missing something here ...... sorting 500 calves is OK, but doing scouts and volunteering is too much ..... ??? ??? ??? ??? ???
Clarice
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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
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Clarice ... that is 500 pound calves ... I think 500 calves would cause me to go belly up :D ...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
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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
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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 ;D)
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
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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.
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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 :D...but I can take them over a mall any day
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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 (http://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
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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
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Thank you Vonda. I am so happy you now have a new companion. I agree one pet does not replace another. We had a lab when we first got married and she was the friendliest and happiest dog and we still cry over the lost of her and she died 20 years ago. However, a shepherd is a totally different dog from a lab and shepherds are so loyal to their owners (my lab loved everyone). Our shepherd sat at our feet always, she was our security, if we were sad or sick she could sense it and would try to make us happy, she protected our yard and home, we could take her anywhere without a leash and she stayed by our side, she was noble in her life and noble at death. I don't know if I will get another dog anytime soon but I know if I get one it will be another shepherd. In the meantime my three cats are trying to be loyal like Steffi, a little hard for cats but they are trying very hard. They miss her too.
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Thank you Vonda. I am so happy you now have a new companion. I agree one pet does not replace another. We had a lab when we first got married and she was the friendliest and happiest dog and we still cry over the lost of her and she died 20 years ago. However, a shepherd is a totally different dog from a lab and shepherds are so loyal to their owners (my lab loved everyone). Our shepherd sat at our feet always, she was our security, if we were sad or sick she could sense it and would try to make us happy, she protected our yard and home, we could take her anywhere without a leash and she stayed by our side, she was noble in her life and noble at death. I don't know if I will get another dog anytime soon but I know if I get one it will be another shepherd. In the meantime my three cats are trying to be loyal like Steffi, a little hard for cats but they are trying very hard. They miss her too.
I think it depends on the lab, one of mine is very intuitive and territorial, while the other one just wants to play and be scratched, however they both protect their yard! It really is so tough to lose a pet. My chocolate has not been interested in food for the last few weeks, so were doing all sorts of tests to see what's up. Its really scares me when they don't act like themselves. I lost my last dog to cancer and this one is just way to young to be sick...anyway they are both amazing but I feel like my chocolate understands me better than most humans do!
Just my 2 cents,
Liz
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bdsgurl,
There is a lot that can be done to alleviate post-op headaches, including not relying on your surgeons for help and finding a headache specialist. Head over the the headache section of the forum for tons of discussion and experience!
Capt Deb
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:'( Not sure if I'm the right one to comment. I'm actually this AN's wife of 27 years. I don't understand or can't even imagine what my husband and all of you are going through! But, I DO care! I don't know what to do anymore to help him. He is angry and in pain all the time. He had his surgery in March of 2009 and it is over a year and he says he feels no better. We went through months and months of physical therapy to work on the balance issues, but he still walks like he has had too much to drink. His headaches are horrible and I try to help by rubbing his head (when he lets me, most of the time he just pushes me away, physically and emotionally! I want to understand, I want to help, I want the love of my life back. :'( He thinks that nobody cares about him, but they do! Most family and friends ask ME how he is doing rather than ask him. He just does not seem to be "available" to most people. So while he thinks no one cares, I'm having to constantly tell people that "no he is not well, he is miserable and I don't know what to do anymore" I think one of your replies said it right when they said that "loved ones just want you to be normal again". Of course we want our loved ones to be normal again, who would want anything like this to go one for someone you love sooo much! Most people do have a hard time understanding constant pain, especially when they can't see it. He does put on a "normal" face for people when we do venture out, but at home, you can see just how miserable he is. He does not believe that there is any real life left for him. I love him so much and wish I could make him happy and healthy again. :'( We have been through so much these past two years, I don't know how we are still together except that we made a commitment and believe in it. When we heard that he had this tumor, our lives stopped. EVERYTHING HAS CHANGED! We almost lost our 14 year old daughter three times to suicide (because she thought her Daddy was going to die from this tumor and surgery) She was Baker Acted one week before my husbands surgery, and again the night before his surgery and one more time Easter Sunday a couple of weeks after his surgery. I spent two week in Gainesville going from one part of Gainesville to another part of Gaiensville trying to help my husband get better enough to go home and the other trying to convince our daughter that we loved her very much and that her Daddy was not going to die, although he often says he wishes he would! I hate what this tumor has done to my family!! I know he was the one who had the tumor growing in his head and the one who had the surgery to remove it. I know that he is the one who is STILL dealing with the (JET ENGINE' noise in his head from the tinnitis (caused by the tumor), I know that he is the one who is dealing with the contant pain and dizziness as well as the emotional effects all of this has on him, BUT, he is the love of my life and I too am affected by all of this!! I am heart broken and torn because I don't know what he needs or what to do for him. Please understand that I am so sorry that any of you have and are still dealing with this life changing "crap", but some of us really do CARE!!!!
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Hi, Dusty's wife ~
I'm so sorry to learn that your husband is having such a difficult recovery and that you're struggling to find ways to help him. I re-read Dusty's earlier posts and it seemed as if he was doing O.K., post-op, except for a stubborn, aggravating problem with persistent tinnitus and some balance issues. Apparently, his condition has deteriorated in the past few months.
Although I enjoyed a fairly smooth and rapid post-op recovery from my AN surgery, my wife suffers from spinal problems (3 major surgeries) as well as Crohn's disease (colitis/IBS), Fibromyalgia and some lesser issues, so I understand what living with someone in constant pain can be like. She is on various medications but refuses to take opioids (narcotics) . She is very active and refuses to allow her pain to define her or control her life. I greatly admire her for this, and she knows it. I doubt that I could be as stoic if I had I her pain to deal with. I truly believe that women handle pain much better than most men. However, I can relate to your husband's adverse reactions and negative outlook because most men (including this one) hate to be seen as weak and resent needing to be 'helped', unless they ask for it....which we usually won't.....because that would make us appear weak. It's a vicious cycle - and I suspect that your husband is caught in it due to his pain and lack of progress in his recovery. Chronic headaches can be very debilitating and certainly contribute to depression and withdrawal.
Your anguish (from not being able to alleviate your husband's pain) is palpable and heartbreaking to read but I'm glad you posted your message because others have been where you are or your husband is today, and come through it. Your dedication to the man you love is touching and certainly admirable. This kind of love and caring is becoming all-too rare, today. I'm happy to report that my wife (of 40 years) was equally solicitous following my AN surgery in 2006. I was a 'bear' for a few weeks, as I was furiously impatient to 'get back to normal' (even though my neurosurgeon commented that I was 'breaking all the records' for post AN surgery recovery. Not fast enough for me, apparently. My wife has told me that I was grouchy and, like your husband, would push her away when she attempted to make me comfortable. I recall doing that, to my shame, because I didn't want to be 'dependent' or appear 'needy', which I now see was ridiculous. My wife has confided to me that she worried I might remain a 'grumpy guy' and if so, she wondered whether our marriage (great, up until then) would survive. Fortunately for all concerned, I got past this 'stage' of my (splendid) recovery and she says that I was back to my old, congenial self a few weeks later. I still admire her patience that came from her love for me and I'm still deeply appreciative of my wife's ability to look past my then-grumpy demeanor, not take it 'personally' and persevere until I was better.
I hope you can get through this, too. I would suggest that your husband consider consulting a pain management doctor for help. My wife has such a physician and he has been very helpful in many ways, including surgically installing a patient-controlled (electronically) nerve-blocking device in my wife's body (last year) that has helped lessen a lot of the serious pain she was enduring for a long time. Modern medicine is astounding and there are a host of medications available to help those in chronic pain. I trust that you and your husband will look into this possibility.
Meanwhile, you'll likely receive some replies to your post that will, I assume, offer you hope and encouragement as well as some practical advice. Of course, you and your husband will be in the prayers of many, including me. Please post here whenever you feel the need - and I hope that you'll both have better days ahead.
Jim
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Oh, Dusty's wife .....
I am so sorry Dusty is still suffering so ..... and you, along with him. As married couples we signed on "in sickness and in health." Sometimes the "in sickness" part becomes quite overwhelming.
Jim has very eloquently responded to your post and I hope you can take some consolation from it. The only thing I would like to emphasize is to please try to encourage Dusty to seek out medical professionals who will continue to try other avenues for relief from not only the physical (and severe tinnitus is physical) aspects of his post-AN treatment, but the emotional aspects, as well. As most of us can attest, having an AN was life-changing. However, it should not mean the end of useful living ..... just changed from what it was before. Life is not the same when you are suddenly SSD, but there are ways to deal with it. Do not give up seeking answers and other treatments.
New advances are being made all the time in treatment of tinnitus. Vasilike Rauch, AuD was an excellent presenter at the Chicago ANAUSA Conference last summer and she spoke on new advances in the treatment of tinnitus. If you go to: http://www.ctran.com/cgi/relycart.cgi?DN=ctran.com&FILE=/orders/ANA/orderform.htm you can order a transcript of her session. If you join ANAUSA, the newsletters carry the latest information on treatments. The American Tinnitus Association is another good resource (see http://www.ata.org/) as well.
And please know that we care on this forum so encourage Dusty to vent and share with us the walk he is taking.
Many thoughts and prayers for relief.
Clarice
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Hi Dusty's wife,
I can understand and empathize a lot with what you are going through! I don't even know what my husband would say if he were to type on this problem, but he would probably say, I'm not as happy as I used to be. The AN kind of stole the "joi la vie" from my persona. I am hopefully turning a corner now, 4 years post op-Actually tomorrow is my 4 year anniversary! (I kind of blocked the exact date out of my mind for some reason. It was a crazy time- we were geographically/military separated, it was a mess.....)
Anyway, I too am dealing with many issues, thankfully not the headaches, but it is a long road dealing with all the things that come at you all the time. I have bad tinnitus, (I don't think as bad as your husband), SSD of course, facial nerve cut, so dealing with all the issues there (eye issues, etc.) It wears me down. I try to put on the happy face when away and really try at home, but it is hard. (I have a dear husband who unfortunately sees the glass half empty while I try to see it half full, so that is not conducive to positive healing).
If there is an AN support group nearby, I would definitely have both of you go. I have never given up hope to feel better, so it all depends on how persistent or motivated your husband is to "feel" better.
I recently had facial micro/neuro/vascular reconstructive surgery :o for facial movement and smile restoration. I will hopefully begin to see movement to the face in a couple of months. Right now things are "cooking". There is the masseter nerve supply to a transplanted muscle into my cheek area. Pretty intense surgery. I refer it as my "miracle surgery." I take XANAX for the tinnitus which helps to tone it down from a scream to a 24/7 high pitch shrilly sound.
I'm going to get some eye procedures done in the fall, and get the BAHA restarted. (Had it inserted during the original surgery, but it wasn't working well, so they "unscrewed" it and said I could try again later.
So I keep pluggn along,and am looking forward to much better times and function, but it is hard, day after day, and depressing at times (then there's female hormones!) You are probably feeling like "danged" if you do, "danged" if you don't when it comes to supporting your husband. I know my husband feels that way!
I'm also on antidepressants. Some people do not like to take pills, but it is a necessity.
Anyway could you encourage your husband to see a psychiatrist for antidepressants? there are many meds out there that also treat chronic pain (elavil, neurontin come to mind).
I feel like it is a part time job just taking care of myself,- always going to some sort of doctor. I also tried acupuncture- which some people find relief from headaches if they find the right chinese acupuncturist.
I'm rambling a bit, but just hang in there and give lots of hugs. It is an inner hell that he's experiencing, but he has to want to seek treatment to feel better. Does he work full time, is there insurance issues?
You and Dusty are in my prayers. It is a hard road- hang in there.
I get stuff from the ANA, and ATA, because I want to know when the cure for tinnitus comes!
Okay enough rambling.... I feel better anyway!
Maureen
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Hi Dusty's wife,
There is a support group meeting in Jacksonville-don't know how far you are, or if you and Dusty are even interested, but food for thought:
FLORIDA - Jacksonville
Date: Saturday, June 26, 2010
Time: 1:00 pm
Location: Mandarin United Methodist Church
Room 303
11270 San Jose Boulevard (State Road 13)
Jacksonville, FL 32223
Directions: The church is 3/4 mile south of I-295 on san Jose Boulevard.
Topic: Caring & Sharing
RSVP: Joan Vanderbilt at 904-287-8132 or joanvanderbilt@gmail.com
Johnny Diaz at 904-284-6192 or johnny.diaz@yahoo.com
More Info: Family members, caregivers, friends and interested persons are encouraged to attend.
Maureen :)
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OK. Now that my wife has vented her frustrations I guess it is my turn. I could not make it day to day without my wife Tracy. As hard as it is to understand my situation she is always positive and supportive. I think everyone else wonders why I have 'issues' when the tumor is gone!
To expand a little on Tracy's emotional cry for help on this forum let me say I 'was better' 6 months out from my March 2009 surgery. When my employer decided to demote me due to 'too much sick leave' I think I lost all faith in the people I thought I knew. Even the coworkers I considered friends completely stopped communication. This includes spouses of coworkers who had become friends of my wife. We have been through hell as a family and now have lost our home. Replaceable but not forgetable. At least not right now. As for my doctors they have all been helpful in their own way but I ask myself constantly why the patient has to coordinate with so many doctors. How am I to know what I 'need' to manage sever tinnitus, daily headaches, dizziness, depression, etc...... The medical profession is too much about getting you in and out I don't know why we need them at all. Let me deal directly with the pharmacist and I will eventually find something that will ease the misery. Until then no sleep, headaches, jet engines in my head, etc...... I have a lot on my mind but I will stop here. Just want everyone who has read and responded to my wife to know that we are fine, it's everyone around us that is truly crazy! ::)
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When my employer decided to demote me due to 'too much sick leave' I think I lost all faith in the people I thought I knew.
Dusty, I'm very sorry for all you have gone through, and continue to go through. This statement really disturbs me. Did you take any more sick leave than you had earned? Had you received any warnings about your performance?
That just does not sound right. Have you considered speaking with a labor law attorney?
Sara
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Sara,
Thank you for your concerns. As for the job issue it is just another example how people can't or won't try to understand an invisible handicap or medical condition. I was well aware of where this was going but my health was the primary concern at the time. I was sitting with 2000 hours of sick leave so that was never an issue. In the position I was in I was and technically still am in an 'at will' position subject to termination at any time for no cause. The bottom line is that I was too much a people person and expected the same from my superiors. Life goes on and health is more important to me than any job. As long as my wife Tracy is still here then everyone outside my direct family, and fellow ANAers, nobody else matters much to me. Thank you again.
To those with personal emails you will hear from my wife Tracy when our internet connection is back up. Using a cell phone to make this entry so spelling may be questionable.
Dusty
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Dusty,
I am so sorry to hear of your bad turn of events in your work. Just sickens me. As if all those post AN symptoms aren't enough, your professional and personal/financial life are suffering too from this
"gift that keeps on giving."
All those suggestions I made are great, but you need insurance, a doctor who cares, $$$$$$$$$, etc & it may not be feasible. The only thing I can recommend is the support group in Jacksonville. You may meet up with some people who can empathize.
Tracy sounds wonderful and you are blessed to have her. Hold on to her!
Hang tough, like I'm sure you are doing. Life sometimes is just NOT fair. Our lives are forever changed with this AN, in some degree. >:( And you are right, the "hidden disability" that we have is real.
There was another post about a book re: hidden disability. I'll forward the post if I can find it.
Maureen
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Here is a clip from Phyl on the book. That reminds me that I would like to read it too. My tinnitus/deafness/out of sorts, etc are truly hidden.
I know I've mentioned it a while back, in passing, but I'm going to suggest a book....
Living Well With a Hidden Disability: Transcending Doubt and Shame and Reclaiming Your Life (Paperback)
by Stacy Taylor
http://www.amazon.com/gp/product/1572241322/ref=cm_rdp_product
My sister bought me this book many years ago when I first took ill (non-AN) and it really helped me to understand trying to deal with the issues when others don't understand when I complain about not feeling well.. .and thoughts as to how to overcome. It may be worth a peek.
Hang in there. Hugglez to you all!
Phyl
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Here is a clip from Phyl on the book. That reminds me that I would like to read it too. My tinnitus/deafness/out of sorts, etc are truly hidden.
I know I've mentioned it a while back, in passing, but I'm going to suggest a book....
Living Well With a Hidden Disability: Transcending Doubt and Shame and Reclaiming Your Life (Paperback)
by Stacy Taylor
http://www.amazon.com/gp/product/1572241322/ref=cm_rdp_product
My sister bought me this book many years ago when I first took ill (non-AN) and it really helped me to understand trying to deal with the issues when others don't understand when I complain about not feeling well.. .and thoughts as to how to overcome. It may be worth a peek.
Hang in there. Hugglez to you all!
Phyl
GREAT BOOK!!!! Written by someone who also has a hidden disability and I know its probably hard to read with the headaches, but its not too intensive and totally worth it if you can manage.
Also I completely empathize with you and I too have lost friends through this process, but when things get rough you know who your real friends are. I know now that I am better off without the one sided relationships in my life. I'm sorry too that you lost your home and I understand how much of a financial strain the surgery and subsequent therapies, Dr visits and such can be.
Hang in there and as long as you have eachother you are rich and enriched in other ways,
Liz
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Dusty,
I too experienced many unpleasantries from my employer and fellow employees during my 19 month work period after I had surgery. I had a very nasty review and didn't receive a raise because of my time off for Dr appointments and killer headaches. I too was a very friendly people person and it warms my heart to know that many of my clients cared more about my health than my employer and coworkers. I have been off on disability since April 2008.
My husband and four grown sons have been wonderful, but at times they really do not get what I go through. I'm grateful for my family and their support, unfortunately at times I'm rather witchy because of constant headaches and facial pain so I do not express my true feelings often enough. I read the forum basically everyday but do not post often unless it is a topic I feel strongly about. I'm a bleeding heart and I feel for all the "newbies" and all the chronic pain suffering folks like myself. This forum has helped me gain knowledge and has been a comfort knowing I'm not alone in this journey.
I hope you, your wife and family all the best. As Phyl has told me a million times "inch by inch, day by day" words all of us need to live by.
Wishing you peace,
Anne Marie
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Another thing I must add here ;D
I'm feeling isolated and haven't made any good friends since we moved to WA 3 summers ago. I found out about the AN when I lived in TX with my kids while husband was stationed in Bremerton, WA.
Had the surgery, went back to TX for one year, and then moved here. So all my friends back in TX who knew about my condition were very supportive and I miss them!
Being new here, (funny, I still feel new, but I've been here 3 years!) I feel more socially isolated. We live on acreage, not in a neighborhood, and I just am not social anymore because it takes so much emotional energy with the tinnitus/deafness in restaurant and loud places-what's the point? I don't enjoy myself, I try and put on the happy face, I'm interested in what you are saying if I concentrate real hard ,kind of face. ::) I'm exhausted when I get home, and basically go to sleep. kinda sucks
I do have some coworkers who are empathetic, but no one really gets it.
So I'm so glad for this forum. And I'm looking forward to the support group meeting here near Tacoma this Saturday... Anyway, for me, no one really asks anymore, because no one knows!
Maureen
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Maureen,
I have lived in my survey since June of 1988 and to this day I still feel isolated. I just mentioned to my husband tonight about how weird it is that we have three set of new neighbours in a matter of two and a half years. When we moved into the neighbourhood, we were the only couple with a baby, everyone had kids in high school or the home owners were retired. Our area is also ethnically divided with Italian immigrants and Serbian immigrants with Louie and I both first generation Canadian, so socializing never occurred. Now a few have past away and my next door neighbours' youngest son is 5. It's nice to hear children's laughter especially when grandchildren from other neighbours are visiting. I guess it really doesn't matter if you live in the city or more of a rural community, sometimes people just do not seem to be very neighbourly.
I do realize I haven't moved from a province or state to another, so I do have my family base and a few close friends. Maureen we do have each other here on the forum and I will never forget you sending me the oils for my headaches, I just read the card you enclosed the other day! :-*
Anne Marie
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Thanks Anne Marie,
Funny you should mention those oils. I had NO idea that your headaches and facial pain were so bad when I first met you on the forum and sent my extra roll on aromatherapy oils.
Kind of like sending tylenol for someone who suffers from migraines! But needless to say, I'm sure you're enjoying the aroma, even if it doesn't do anything for your major headache! :o
Hang in there, and keep the humor whenever possible! (love the emails ) :-*
Maureen
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Hi Moe!
I just sent you an email from my regular email account(hope you got it!)...then I found this. Sounds like you have been through sooooo much! Hopefully this is a new beginning for you! Please let me know how you are feeling & your progress from the surgery. It has been a little over a month now right? I totally understand & can relate to the feeling of being socially isolated(your post from yesterday) not because of where I live but & to quote you "I just am not social anymore because it takes so much emotional energy with the tinnitus/deafness in restaurant and loud places-what's the point? I don't enjoy myself, I try and put on the happy face, I'm interested in what you are saying if I concentrate real hard ,kind of face. " I just feel uncomfortable & out of place. WOW so nice to hear these words that I am thinking that no one gets!! But you do! I don't mean to sound ungrateful or sound like a constant complainer...just nice to have someone who you can relate to! :) I am so blessed!! We seem to share a lot of the same problems, although my facial nerve was intact there was slight paralysis but nothing like what you have had to deal with! Are you still working? Unfortunately I was not able to return to work & have been on disability since my surgery...that was hard to take! But again I have many blessings just get frustrated some times...just wish I could chase my girls around the house like I use to (they are 16 & 21(in July) & walk on the beach or any where with out holding on to something or someone! :( I have edited my story a little after re-reading...I was first diagnosed in May "03" & told it was a very small tumor & that people live with these for a long time with no problems & that they don't usually get very big & since I was young(47) & so healthy I would probably be fine. Was told to report any changes to my DR. For the most part I was doing ok except for the feeling like my ear was plugged up & the constant ringing in my ear. Until about 2 years later in May of 05 when I almost blacked out in my classroom one day...I use to teach preschool, taught for 10 yrs. I went to the Dr. & was referred to specialists to find out the tumor had grown & needed to be removed. By the time they did my surgery, the tumor was pressing on my brain. Surgery was 14 hrs. a translabyrinthine resection on the right side, was on Aug. 5 2005, to remove a 3cm plus skull base neuroma. The tumor was removed & all had appeared to have gone well, no damage to facial nerve...until 4 days after when I couldn't close my right eye. Dr.'s said it was probably due to post op nerve damage. For lack of really knowing why... Had to begin seeing an ophthalmologist & had a tiny gold weight placed in my eyelid so my eye would close. The weight was in for about a yr. until my eye was able to close, almost completely with out the weight.I also have some nerve damage on the right side of my face, kinda like when you have had a shot of novacaine. It feels like it is pulled down but people say it isn't noticeable...just annoying & uncomfortable. Along with this I was left with balance problems.(disequilibrium) I had vestibular therapy for 1 yr. & I still use a walker or cane or have to hold on to some thing,loss of hearing in the right ear & tinnitus,facial weakness,metallic taste in mouth,eye problems...severe dry eye & had to have cataract & lens replacement surgery, & fatigue. Besides the balance problems my biggest complaint is the pressure I have in my head & across my nose & under my right eye...always there & sometimes unbearable!! Feels like I got punched right between the eyes!! Never imagined anything like this would happen! Look forward to hearing from you! You are truly a blessing to many & so positive! Prayers my friend you are an uplifting lady who has reminded me I have so much to be thankful for!
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Yes I got your email and will respond.
Thanks for the kind words, they mean a lot!
Maureen
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K92GIRL - I totally understand what you are going through. I could have written your last post except that it's my left side, not my right. I live with my daughter and her family. I stay in my room most of the time because the normal sounds around the house drive me crazy...she has 6 and 7 year old girls and a 12 year old son. They are good kids, but fight and scrap like all brothers and sisters. Between them and the tv, it's too overwhelming for me to deal with. My daughter understands, but it's hard missing out on the life outside my door.
My prayers are with all of you...hugs, Pat