ANA Discussion Forum
Post-Treatment => Cognitive/Emotional Issues => Topic started by: ppearl214 on January 26, 2009, 04:08:14 pm
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Hi all,
over time, I have heard of so many (myself included) that have a difficult time trying to adjust to physical, emotional, etc changes that we endure during this journey we didn't sign up to ride.
Many have a very difficult time trying to adjust to things, such as SSD-hearing loss, facial/eye issues, tinnitus, memory issues, balance, etc.
Many here have offered such hugs and support and words of encouragement to those that have had or are having a difficult time trying to adjust to the "new" you (ie: post treatment, etc).
Many here have met me face to face and can see the war I wage as my body tries to fail me daily. Beyond my AN issues, I have other medical issues, etc. I use to be a runner/power walker.... now, I walk with a cane. I use to be 30 lbs lighter... now, I'm a whole lot more heavier. I use to be in the gym 6 days a week, doing cardio and circuit training. Now, I am lucky if I can lift a bag of groceries. I miss my "old" me SO very much.... but, I've learned to adapt as best as I can to the "new" me... even if the body is not what I ordered.
As it pertains to AN's, based on those that post here or communicate with me directly, note the difficult time they have trying to embrace the "new" self they have become.
Thoughts... remedies... words of encouragement, etc are so very welcome here. I am hoping you all will share here about trying to embrace the "new" you... and how you've learned to mentally/emotionally cope with it.
and for those here that are trying VERY hard to adapt to the "new" you.... share here... and we are going to support you as best as we can.
We've discussed this lightly throughout the threads on this site... I'm trying to centralize a thread here to use as a reference point for down the road, for those that may be having a difficult time... I/we can point them to this thread to let folks know that they certainly are not alone. I'll post later exactly how I've embraced this "new" me, as much as I don't want the "new" me.... but, it is now who I am and I have learned to love it. :)
thanks all!
Phyl
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Phyl,
This is one of the best posts I have seen on this forum. You just hit it precisely. I was not my usual self during the recovery period and just kept telling myself that if I could recover after the first surgery, I can do it now. I also realized that the hardest thing to do for me was asking for help from others. I used to be so damned independent! Others, in turn, were so used to me being independent and never needing help. Now, I am less of a caretaker and do ask for help periodically to train everybody else around me that I have needs,too. My condition was such a shock to everybody. I just went from one extreme to another. Now I am somewhere in the middle.
I also refuse to accept my "new" self. It just makes me angry that I have limitations or cannot do things the way I used to. I keep searching for ways to overcome that.
Eve
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Phyl,
As one who faces his surgery tomorrow morning I know that this is going to be a turn in the road for me regardless of the outcome. I don't think I'll be the same person no matter how good the surgery turns out. Of course I hope the outcome will be good and the changes will be minimal -- I do not expect my AN ear to ever hear good again and the chances are 50/50 that I'll be completely deaf in that ear. I have hope for the other aspects of post-surgery outcome and I believe I will adapt to whatever happens.
That said, as a 57 year old man who has kept him self in pretty good shape most of his life, and even before the AN, I'm still not the same me I was at 18 or 20 or 35 or 45. I wish I was but it just can't be. Things happen, you change, you get older, illness, money problems, job losses -- they all take there toll. We have no choice but to make the best of what we are right now.
Cherish the memories of the 'old' you, don't mourn them, and yes, embrace the 'new' you.
Cheers,
Neal
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Hi Phyl,
I didn't realize you had all the extra challenges. You do seem to stay so upbeat and are quite the inspiration. Although my symptoms are still relatively new, and may get worse as time progresses as the tumor swells, it still is a "new me" for now. Really, all I have to do is read the paper and it puts everything into perspective. All the tragedies in the world and I realize that my hearing issues are insignificant and I can handle it just fine. That's probably not the most healthy way to put it into perspective, but it does it for me (sort of smacks me in the face).
Good thread. Tisha
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Hi Phyl, There are so many thoughts racing through my head right now as i read this thread... Although i am currently in 'Watch & Wait' mode and only have some hearing loss, in the past i had been so frustrated with a lack of explanation for that condition - i couldn't hear everything clearly that my children said, got frustrated in a crowded room trying to talk to others, and didn't always feel i was giving my all as a preschool teacher. I remember when i read the MRI report, i felt actual relief knowing the reason for my hearing loss.
That was then, and this is now. No going back to the 'before,' just like Neal said. (One friend said this same thing to me, but not with Neal's positive attitude...boy, did that drag me down! As a matter of fact, i didn't respond to this person - don't want to spend the energy.)
I came to this site looking for information; what i see is so much more -the love and caring that everyone gives is indescribable!
In embracing the 'new' me, i find it helps to sometimes share my story with others. Even more so, I always try to listen more, knowing that we each have a story to tell.
And last but not least, i try to take one day at a time, with grace, patience and a little humor!
Thank you, for all you do.
Sincerely,
Sue
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Phyl:
I think part of the problem many of us have adapting to our personal 'new normal' is that the majority of AN patients are middle-aged (or close to it) and have spent their adult lives without having to deal with the issues that currently confront them. Now, they can't balance well or their face is numb on one side and alters their appearance so that they no longer 'look like 'themself'. SSD is a big adjustment for all of us, with or without hearing aids (BAHA or otherwise). Headaches and/or an eye that won't close properly and has to be lubricated almost constantly is quite a challenge for anyone, harder when you're confronted with the challenge at 40 or 50 years old and not quite as resilient as you were a few decades ago.
AN 'complications' - whether from surgery or radiation - are problematic both physically and emotionally. The physical can usually be dealt with at some level, although headaches can be maddeningly stubborn and SSD can only be partially alleviated with hearing devices. Some of us have only minor issues to deal with and we tend to take them 'in stride', as it were, knowing how much worse off we could be. Still, my SSD and (mild) tinnitus, the (apparently permanent) 'numb' spot on the side of my tongue, my occasional itchy 'dry eye' along with my inability to regain 100% of my ability to balance is a bit frustrating and yet, invisible to others and, compared to what some AN post-op/radiations patients suffer, hardly worth complaining about (except, occasionally, to my always-sympathetic wife). Perhaps it's a bit easier for me because at my age (66 next month), I don't have to deal with work issues, run after young children, or beg off racquetball games. :) Even so, I totally believe in optimism. I never ask 'why me?' As a Christian, I trust God to guide me through whatever comes and I realize that this life, in this body, is temporary and fleeting. As the old Christian hymn says: "This world is not my home". Basically, like most Christians, I believe I'm just 'passing through'. This belief helps me (and my wife, who has multiple health issues) deal with things we have to endure while we're in this body. For the non-spiritual folks, simple positive thinking and steely determination can also go a long way. I truly believe that our message boards are a great resource and a welcoming place for all AN patients, pre and post-op/radiation. Because ANs are relatively rare, we're a source for sometimes hard-to-find information beyond the strictly clinical and of course, a very supportive 'family', of which I'm proud to be a small part.
I've written before about my respect and admiration for those who deal 24/7 with some of the more difficult aspects of AN post-op/radiation problems, including facial paralysis and searing headaches. I'm not so sure how well I would handle such things but I'm in awe of those who do handle these problems with grace and aplomb. They're an inspiration to us all. Although we very much welcome positive outcomes and success stories, I suspect that the day-to-day perseverance and strength of those AN post-op patients dealing successfully with 'issues' are the best kind of encouragement of all because they demonstrate a positive mindset in action. They either see the 'light at the end of the tunnel' (whatever that may represent) or have made peace with their 'condition', especially if it is intractable, as, unfortunately, some AN post-op problems can be. Either way, these folks show us all how it's done - and I salute them.
Jim
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Well said guys.
I am very lucky to have a very supportive family, especially my wife who has to put up with a lot of "pardons" and moods through headaches. I also have two little dogs that are always there for me even though they want to play 24/7, they are a great comfort.
It is hard to adjust to the person post AN but as you say Phyl, hust got to accept it and get on with it. Doesn't stop kicking the door down in frustration from time to time but hey, I can live with that.
laz
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Hi all,
This is exactly right. There are things that physically remind me that I've gone through this and emotional things and both have changed me. Both of the changes cause me to occasionally "kick the door" but in the end I have chosen to live my life anyway and do the things I want to do anyway and if my face never feels the same I guess I'll just get used to it. As for the things I can't do, there aren't many, but I'm dealing with it. And this is the only place where everyone gets it! How cool is that?
Marci
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Great topic and wonderful thoughts.............
As one going through a period of deep "mourning," I needed to read this. It has been nearly 2 years since my surgery with catastrophic complications. I realize that I am fortunate to be alive and I am thankful for that. And my doctors are "amazed" that I can even walk, let alone work. These past 2 years have been a continuous struggle to regain as much as I possibly could. It seems now that I have regained what I am going to get. And it's tough to reconcile my thoughts to that fact. I have been released from care by the neurosurgeon who installed my shunt. This is a good thing, but that just drove hone the point that this is how I am going to be.
Like Jim, I believe that I am "passing through." Right now, I am just trying to make the best of it. I look forward to reading your thoughts and comments.
Best wishes,
Jeff
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As soon as I think I know the new me I change ...so I guess I am evolving me
I think it was Scott brought up age... at 47 and multiple health issues going on I think that has made
acceptance harder for me ... up until surgery "Bennie" was just there... now the after effects of his removal
are daily problems to deal with... hoping with a little more time I will find that place that is comfortable
enough for me to say...I'm alright ... and fully mean it
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I'm almost 8 months post-surgery. I don't want to say that this is what the "new me" is like just yet. I'm going to wait for my 1st yr anniversary before I can be sure of who the "new me" is.
Syl
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Right, I'm the "evolving me". Which I will live with until my one year anniversary (like Syl), and then I will still be evolving.
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OOOOhhhh The old
Denial
Anger
Bargaining
Depression
Acceptance
thing. I guess I found this forum or re-found it in it's modern form at about my depression stage and it helped me move to my current acceptance stage. Dr Love and I entertained dreams of sailing off into the sunset during our golden years--literally sailing off on a 40 to 50 footer. But with chronic headaches and now financial issues brought about by my being unable to contribute financially to said dream, things have certainly changed. I can't imagine being caught offshore in a gale with a frigging migraine!!
My first grandson was born the night before my surgery and I cannot imagine life without him or his little brother. Even though they aren't biologically mine but are my step grandkids, it would tear my guts out to leave them ashore for months or a year at a time and go off sailing now and not see them. So life does change. The whole lemonade thing.
As a fiesty feminist lady yacht captain artist who has made her own way in life and never been dependnt on ANYONE for ANYTHING (and didn't even get married till I was 46 fer gosh sakes,) I am now totally dependent on my dear sweet husband financially, emotionally and just about every which way imaginable. This upsets me to no end sometimes, but then I just get on here and I blow off some steam or I call Phyll or something.
The New Normal stinks sometimes but its all we got and it sure beats the alternative. Just gotta look for the pony in the room fulla pony poo!! Hee!! Hee!! Hee!!
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/sailing_boat_closeup_cruising_wi-1.gif)
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I've been trying to tell my friends and family that I might not be the same post-op. They all assume that patients coming out of surgery are improved; why else would they go in? Even Dr. McKenna said in front of my good friend, "No one every says they're better after surgery." But he's in denial. They all say, "I'm sure you'll be fine." And I agree, as I've got a great team in Boston.
At least my children understand. I have a college classmate whom we've visited many times in Scotland. She had a grapefruit-sized meningioma removed in emergency surgery with all the possible side effects . . . walks with a cane, SSD, facial paralysis, has to drink from straw and dab eye with tissue, apply eye drops, etc. So, I can tell them that I could have similar side effects.
I am worried about the outcome four weeks from tonight, but I've coped with rheumatoid arthritis and osteo arthritis, SSD, balance issues and tinnitus, so I'll put in my best effort to regain as much function as I can.
You will be my inspiration.
Thank you.
Nancy
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I am now at three months. I am also evolving and trying to be patient while my body determines what the "new me" will be. I am fluctuating between hope for an improved outcome over time and striving for acceptance of what may not improve.
I am amazed at the broad range of outcomes that are experienced with AN Surgery - from practically skipping out of the hospital to life changing effects. I did a lot of research prior to my surgery, but still felt unprepared for my outcome. I think the reality was an outcome that I was totally in denial about as an even remote possibility. The hearing and the balance weren't terribly "visible". However, losing my beautiful smile with a yet unknown outcome has been very hard and difficult to even comprehend. I hate seeing someone I know for the first time because it is such an immediate expression of sympathy and awkwardness. I'm trying to adjust my thinking to considering all these new "features" to be badges of honor that allow me to "flaunt" that I survived brain surgery! (sometimes it actually works :'( )
The headaches are also hard to understand. I have different headaches every day. I hope that it is still the healing process. Randomly, when I get up from sitting down, I have "brain freezes" after taking a few steps. I have learned to just stop and stand while they slowly release. "never be in a hurry" is my motto. Sometimes the back of my head hurts. Sometimes my brain throbes inside my skull. If I drop something on the floor I debate how important it is to pick it up and leave stuff on the floor for days until I feel up to dealing with the head pain of bending down to pick it up. How to describe the levels of pain to a headache neurologist seems daunting. (I will be seeing one later this month). I guess I'm trying to decide what to just "suck up" and what to try to address with drugs or therapy.
Given all of that, I'm incredibly greatful to be alive and to have retained all that I did. I am humbled at how kind everyone in my life has been. Thanks for starting this thread. I think it feels good to just vent and contemplate as we try to describe the difference between the old and new.
Samantha
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I just wanted to say a VERY heartfelt thank you to all those contibuting to this thread.. and hoping that each of us is taking away something from it.... I know I am...
Huggles to those that are struggling.... congrats to those of you conquering and embracing... and most of all... MANY thank you's for opening your hearts to share this.
Phyl
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Samantha,
I'm so glad you are being pro-active and getting to a headache specialist.I waited a long time before I did that always thinking that the next drug my small-town neurologist would give me would be the magic bullet. Hope you find some relief soon.
Hugs,
Capt Deb
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Mourning the "old me" ....the life of the party....the energizer bunny....always laughing....flirtatous....silly....always wanting more....
My new self....tired....headacy....irriatable....listless....seeking peace and quiet....
Oh, life has a strange way of getting us to stop and smell the espresso. I'm not the person I was, but I am so much more appreciate what I have. A wonderful husband (most days ;), the male thing, you girls can relate ;D) Four really, really good sons. Seeing their faces each and every morning is the greatest gift I have ever received from God. My cousin Teresa and her husband Boris. My friends Pauline and Nik, Christine and John, Susie, Nicki, and my extended families on both sides.
I've realized I do not need to worry about "the house", "the money", "the outfits", it is the relationships that count. People love me for me, when I'm happy, they are happy, when I'm troubled, they are troubled and when I'm in pain, they are a huge comfort.
I only wish my dad was here to hold my hand, and stroke my hair like he did when I was a teenager vomiting from migraine headaches. I lost my mom when I was 8, I have very fond memories of her but she was very sick since I was three. My father was everything to me. A quiet man with strength of Sampson.
My facial neuroma has beaten my spirits down, but it is my family and close friends who gathered and lifted my spirits up. I have a new admiration for all of them, for their unconditional love for me has helped me cope with my struggles. I am a better person because of them and they are helping me to embrace my "new me"
Life on this forum has given me hope and strength. I read everyones postings, I cheer, cry, laugh and thank the Good Lord for this place. This place has a life of its own. A special, caring, giving and spiritual life, that offers hope, calms fears and helps me to embrace the "new me"
Anne marie
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While in the hospital this week I kept thinking about just getting home. I kept thinking about a Steely Dan song 'Home AT Last'. This morning I listened and it really hit me. Yes, it is a different me but I am home at last.
"Well the danger on the rocks is surely past
Still I remain tied to the mast
Could it be that I have found my home at last
Home at last"
Becker & Fagen 1977.
Cheers
Neal
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This place has a life of its own. A special, caring, giving and spiritual life, that offers hope, calms fears and helps me to embrace the "new me"
Beautifully said, Anne Marie.
Steve
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Thanks Steve!
Anne Marie
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Great thread, Phyl! :)
My new life is good. I finally am finding the lemonade recipe for these AN lemons. Now.....don't get me wrong, the recipe is illusive and individual to taste, but it can happen. My "new normal" is quite tolerable now, most of the time. Not so much because my symptoms improved but more that I have accepted it and adapted to it. I think the stages of grief were present for me. Now I am more at peace with this all. I too WAS an athlete but due to a few health issues along the way, I lost that and adapted. Recently I lost the ability to do my portraits for my business. I did not believe I would ever adapt to that but I am having tons of fun decorating walking canes. Two years ago if someone would have told me this is what I would be doing, I wouldn't have believed it.
I have laughed, I have cried - as the oh so accurate cliche goes. So many people have much worse issues but it is hard to ignore symptoms when they knock you down. This group has showed to me by example and encouraged me with kindness and educated me with their experience. I have faith that other will find their own path via the help from their AN family here, like I DID.
The new happy normal,
Mary
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Anne Marie, you made me cry. That was such a wonderful post.
I want to forget this whole thing like it was some bad dream. It stares me in the face everyday I look in the mirror. I feel the hardware in my head and think hmmmm I had brain surgery, it is a bit unreal. I have friends in my life that think I am back to normal and question when I don't do all of the social things. I listen to my body smile(or try to) and decline. At first I wanted to scream and say "Hello I have just survived brain surgery!" I have been told I need to move on that was 8 months ago. That's okay how could they understand? I don't think you can truly relate until you live it, that goes for anything. You can try. Life is good and I am in control of me.
Things happened so quickly when I was diagnosed that I (we) kind of went into over drive or survival mode. I realize am different, I am even better. I appreciate life so much more and realize how very precious my family is.
At Christmas I am the one who puts on the big spread and makes sure everyone is happy and full. I also was so bent on clearing up and wash up right away. This year was awesome.. I kept saying those dishes will be there later waiting for us, come sit. Enjoy every minute.
Everyone will die but not everyone truly lives. (The Bucketlist)
Michelle ;D
Loving Life!
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I think I am in a mourning period... I have mourned the loss of some things since surgery...mostly the
ability to get around the farm and chase cows... ;) ... sounds silly I know but if you live on a farm and
work it and one day get up and can't it is sad ... I helped sort calves last time we vaccinated and sold off
some and had to medicate myself before and again after to get through it without crying from pain...
This week my husband has been on call to be sent to Kentucky ...he works for the local electric system...
only 10 of our 30 linesmen and right-of-way crew are here ...rest in Kentucky ... some may come home and Bo
will leave ....
without talking to me first he talked to my son ... they arranged a row of round bales of hay with a hot wire
in front of them so I could take the old farm truck and bump them and roll them off the hill and wouldn't
have to deal with gates , the tractor and all else that it usually takes to put out hay... good system but I am totally
pissed off that he went behind my back and talked to my son first and thinks that I can't handle feeding the
cows... I blew my stack and told him they could starve for all I cared...
he got all apologetic and asked what I wanted him to do... I want to not be treated as a handicap around
here... I want to be able to jump up and down off tractor and get gates and take care of things ...I want to be
in on decisions being made for me and not told of them after things are arranged ... it was a good plan and would
be easier than the usual feed plan just because the up and down and dragging gates would get me ... but he
should have talked to me ...not my son ...
and I did something I have never done ... I told him that Travis was my son and not his and to never go behind my
back talking to my kids about me .... told him he could talk to our girls but not my sons ... not that he would get
a 9 and 11 year old to help move hay .. :)
ever since before we were married the boys have come to him over their dad... they have a great relationship with
him and they like him ... they were in mid to late teens when we married which could have been a bad time with all the
changes they were going through but Bo made it easy because he is one of those guys that I don't think has a mean
bone in his body and has no enemies ... even my ex likes him and has thanked him for taking care of his kids when he
wasn't around ... and to try to hurt him like that was senseless ... but a demon took over... I was hurt so bit back
feel kinda sucky now ...stupid thing to say but I have been under alot of stress dealing with the headaches and a
bad doctor and the cold that about zaps me (something it never did before but now makes me ache)... what
does Bo do ...he pats me on the head and hugs me and tells me things will be OK... in ways they will and we will
be OK ... and I will bump and roll hay off the hill to feed the cows and things will be sorta right with the world ...if
I didn't have him I would be insane by now ... and I gotta learn to not snap at him...something that has happened
several times ... I almost think unconsciously I snap at him because he takes it and still loves me regardless...
we talked and are OK... but I know he will do something again because he thinks it is protecting me ... and I will
get mad ... but we will move on ...at this point I have no choice and Bo won't let me not go on...
But I reserve the right to be sad and mad at things that have changed ... as long as I don't dwell on them and
after a short intermission to blow up and rant , I am able to move on and get on with daily life I think I will be OK...
that is something people don't understand ... I am alive but not always alright ... and they don't understand
my anger when it pops out ... or why I get sad ... they think the tumor is gone and I should be happy ...
which I am most of the time ... but the other things come with it ...anger ,sadness frustration etc
taking things one day at a time and some days hour by hour 8)
PS... my Christmas tree is still up ...just haven't felt like dealing with packing all the ornamanets away and don't
want anyone else to do it ... 9 year old is thrilled and plans on adding Valentine and Easter things to it :o ... I did
get the 4 or 5 smaller tress throughout the house put away and other decorations are resting in their boxes til next
year ... but the tree remains in it's corner ...lights twinkling ... I get sad thinking about taking it down so don't ...
and I don't know why ... go figure
3:11 and alls well... I guess I should try to go back to sleep...
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Hi. THis is my first post, but I have been reading this forum for a couple of months, and have got a great deal of information and comfort from it. I have read the thoughts and stories of people who have faced extreme adversity with courage, fortitude and dignity. I am amazed that so many of you find time to help others and share your wisdom, kindliness and compassion. I can only say that if this forum represents the "new yous" you should be very proud. Thank you for being here for all who are wandering around looking for help in the AN world.
Richard
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Hi, RichardS - and welcome ;D Tell us a little about yourself, please. Are you pre-treatment, post-treatment? etc. Thanks.
Now back to the thread:
In my case, I think I'm just as good - if not better - post op than I was pre op; thank God.
I had my struggles post op and I've been depressed from time to time, but with the exception of being SSD - which I "solved" to my satisfaction with my BAHA - and a few minor problems , the only difference I've seen in my life is a feeling of how truly lucky I am. This have given me a whole new perspective on life and what I'd like to do in mine to leave a legacy behind me when it's my time to "go".
After the initial shock of my diagnosis, I decided that I was "given" an AN for a reason and that reason was to help others in my situation in any way I could. To that end I joined the ANA, became a member of the WTT list and the forum, and started to contribute monetarily to both the ANA and the hospital where I had my surgery.
I realize how truly blessed I am and I hope to never take that for granted.
Jan
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HI,
MY LIFE HAS CHANGED AS WELL. I WAS A RUNNER... RUNNING 4 MILES A DAY! TENNIS, A SOCIAL BUTTERFLY THAT NEVER STOPPED. A PHARMACEUTICAL SALES REP.... A LIFE THAT KEPT ME TOO BUSY TO STOP AND GIVE GOD ALL THE THANX, PRAISE AND GLORY AS I SHOULD ! GOD JUST SLOWED ME DOWN A LITTLE TO GET MY ATTENTION LONG ENOUGH TO GET SOMETHING TO ME, NOT TAKE FROM ME... HE SAID " I KNOW THE PLANS I HAVE FOR YOU, THEY ARE PLANS TO PROSPER YOU AND NOT TO HARM YOU. PLANS TO GIVE YOU A GREAT FUTURE" GOD DOES USE TRIALS TO MOVE YOU INTO THE DIRECTION HE WANTS YOU TO GO... AND YOUR PURPOSE FOR BEING HERE ... WHAT THE MEAN GUY MEANT FOR BAD , GOD HAS JUST USED FOR GOOD! I AM GETTING BACK TO MY NORMAL ROUTINES, BUT DOING THINGS ALOT DIFFERENTLY ,THE CHANGE IN PACE HAS MADE EVERYTHING BETTER THAN EVER! I LEARNED THINGS THAT I MAY HAVE NEVER LEARNED. I SEEN THINGS THAT I MAY HAVE NEVER SEEN....
THE GOOD BOOK GUARANTEES US THAT WE WILL HAVE TRIALS., BUT IT IS HOW WE CHOOSE TO HANDLE THEM THAT DETERMINES HOW LONG WE STAY IN THE TRIAL! ;) THIS TUMOR AND SURGERY AND POST OP EXPERIENCES IS TRULY THE BIGGEST TRIAL EVER, BUT I LEARNED TO SPEAK TO MY SITUATION, LIFE AND HEALING! IT IS HARDER TO COPE WITH (IMO) AS LONG AS I COMPLAIN, JUST LOOK WHAT HAPPENED TO THE CHILDREN OF ISRAEL... GOD GAVE THEM EVERYTHING THEY NEEDED TO MAKE AN ELEVEN DAY TRIP, BUT THEY COMPLAINED CONSTANTLY ABOUT WHAT THEY DID NOT HAVE, THEY MISSED EGYPT AND ALL THE THINGS THAT WERE FAMILAR AND LUXURY. THEY WERE TOTALLY OUT OF THEIR COMFORT ZONE IN THE WILDERNESS, BUT THEY WANTED TO BE DELIVERED. BUT GOD GAVE THEM EXACTLY WHAT THEY NEEDED TO SURVIVE AND GET TO THE PROMISE LAND! ;) AN ELEVEN DAY TRIP TURNED INTO A FORTY YEAR TRIP OF GOING AROUND AND AROUND THE MOUNTAIN COMPLAINING! AND THEY ENDED UP DYING IN THE WILDERNESS, STILL COMPLAINING! ONLY 8 OF THEM MADE IT IN TO THE PROMISE LAND OUT OF THOUSANDS! THE PROMISE LAND WAS RIGHT THERE AND THEY MISSED IT BECAUSE THEY WERE TOO BUSY COMPLAINING AND GOING AROUND AND AROUND IN CIRCLES ! GOD DELIVERED THEM OUT OF EGYPT, GAVE THEM INSTRUCTION, A GUIDE(MOSES) AND ANGEL LIMOSINE SERVICE AND THEY STILL MISSED IT! I THINK THE MORAL OF THIS STORY IS..... HOW LONG WE STAY IN A PROBLEM DETERMINES HOW WE CHOOSE TO HANDLE IT. I CHOSE TO EMBRACE THIS THING AND FIGHT TO WIN (ENDURANCE WINS EVERY TIME !)... IT IS HARD, SURE IT IS, BUT GREATER IS HE THAT IS WITHIN ME THAN HE THAT IS IN THE WORLD! I CAN NOT DO ANYTHING IN MY OWN STRENGTH, BUT I CAN DO ALL THINGS THROUGH CHRIST WHICH STRENGTHENS ME! I AM 14 MONTHS POST OP AND EVERY DAY IS A NEW DAY TO GET UP AND FACE THE PROBLEM AND GET THE PROVISION WE ALREADY HAVE THE PROMISE! ;) ATTITUDE IS DEFINATELY EVERYTHING! I HAD TO TAKE MY EYES OFF THE PROBLEM AND HOW BAD IT WAS, AND GET THEM ON THE PROMISE OF HEALING , PURPOSE AND PROVISION BEFORE MY SITUATION CHANGED... THERE IS A PURPOSE IN PAIN, AND WE WILL NEVER SEE IT UNTIL WE TAKE OUR EYES OFF THE SITUATION AND HOW "BAD" IT IS AND THEN WE CAN START TO SEE THE PERFECT PLAN , START TO UNFOLD! IT IS A DAILY FIGHT, BUT I THINK IT SAYS IN THE GOOD BOOK TO " FIGHT THE GOOD FIGHT OF FAITH" " RUN THE RACE TO THE END" PASS THE TEST WHATEVER YOU DO AND DON'T COMPLAIN! ;) MILLIONS OF PEOPLE WOULD LOVE TO TRADE PLACES WITH US RIGHT NOW... COME ON GUYS HOLD YOUR HEAD UP, SEW A SEED OF FAITH AND DRAW STRENGTH FROM GOD AND SEE HOW YOUR VERY SITUATION WILL TURN AROUND! IT HAPPENED FOR ME AND HE WILL DO IT AGAIN AND AGAIN! HE IS FAITHFUL AND GOOD ALL THE TIME! GIVE HIM A TRY, HE KNOWS JUST HOW WE FEEL AND WHAT WE NEED! IN FACT HE ALREADY HAS IT ALL FIGURED OUT AND WORKED OUT BEFORE WE ASK! BUT IT SAYS "ASK AND YOU SHALL RECEIVE" THE SAME GOD THAT "PARTED THE RED SEA" "MOVED THE MOUNTAINS"GUIDED THE STONE THAT KILLED THE GIANT AND CROWNED DAVID KING" WAS IN THE LIONS DEN WITH DANIEL, THE FIREY FURNACE WITH THE THREE HEBREW CHILDREN, IN PRISON WITH PAUL AND SILAS AND JOSEPH AND MOVED HIM TO THE PALACE! HEALED THE BLIND , RAISED THE DEAD, CREATED THIS EARTH, HUNG THE MOON AND THE STARS, DIED ON THE CROSS FOR "US" ROSE AGAIN AND CONQUERED DEATH AND THE GRAVE!!! WOW! I MEAN, IF HE CAN DO ALL THESE THINGS AND DELIVER ALL THESE PEOPLE AND ANSWER ALL THESE PRAYER REQUEST.... MY PROBLEMS ARE EASY! BUT ALL THESE SAME PEOPLE ASKED! WE GET SO SCARED AND FOCUSED ON TRYING TO FIX IT OURSELF , JUST TO SOONER OR LATER REALIZE WE CAN'T DO IT ALONE... SO JUST GO AHEAD AND ASK AT THE BEGINNING OF THE PROBLEM!
THIS IS THE WAY I START MY DAY!
FAITH ;)
"AS A MAN THINKETH IN HIS HEART, SO IS HE"
PROVERBS 23:7
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Someone told me that God won't give you anything that is too hard or that you can't handle...told
them I wish he didn't think I was so strong....
all kidding asside.... the SSD , weeble wobble walk , metal mouth , dry one day running next day eye and
forgetfulness has taken a back seat to headaches ... I could go on with all of them unsolved either by BAHA ,
magic potion that restored balance ...everlasting eye drops that were self adjusting ...whatever.... the headaches
that stop me in my tracks are another thing... they are fewer now than even a month ago but more intense...
once I get some relief there the rest can slide...
I have had to drop alot I used to do... I am transferring my Cub Scout pack to another pack...I don't get enough help
from parents and since I don't have a son in the program (youngest son is 27) I decided after 20 years of
Cub Scouting it was time to give it up... this month we have our last Pine Wood Derby :(... kinda sad about it
but I can't give the boys enough and so passing them to someone that can...some feel like I am abandoning them..
I will still help occasionally with other pack I just won't be in charge ... it will be better for them...and me too as
it will free up some time and energy I can put toward things I am continuing to do
I still have my Girls Scout Troop and we are working on several service projects in the community... it is important
to me to teach a few kids that there is more to the world than themselves and that they should contribute to it ...
be it food drives , book drives , cards to go to the hospitals or nursing homes...jsut to think about their fellow man...too
many are plugged into the GIVE ME GIVE ME way of thinking ...I try to change a few for a few days a month and
hope they remember what we have done and learned as they grow up...
Can't hold out to work at school all day long anymore and have only subbed 4 days since surgery... I do
put in alot of volunteer time at school ... doing teacher aide work for free...at least when volunteering if I have to go lay
down or leave I can...can't do this if I was subbing on the clock ...was offered full time in cafeteria at beginning of year ...
but the fast pace in there almost wore me out before surgery ... all the lifting and carrying and running on the slippery
floor would lead to disaster now ...
So this is my new non money earning me ...we don't really need the money I used to make to survive ... but it paid
for little extras... some friends have to me to stay home and take it easy ...compared to pre surgery I do take it easy...
but the Scouts and volunteer time keeps me sane and makes me feel like I am still useful... I know that I am useful to my
family... I feed them and wash their clothes , bandage boo boos and wipe tears .... but I need the other usefulness feeling ...
most people get it from their job...I am still doing alot of the same thing I used to do at school just don't get paid for it ...
but the satisfaction part is what I need more than money
I think I may be getting a little depressed ... I am sad and then happy in the next breath...and frustrated about 50
minutes out of each hour ... I am sad about loses from AN trip but for most part OK... and all it takes is my nine year
old telling me when I get mad " but you're still breathing Mom" to make me know I am OK whether I know
it that exact moment or not......
but being human I grumble and complain and get mad ... but I will be OK ...
just gotta learn to let people take care of me ... that little rant above about my husband doing something for me that
made me get mad at him looks kinda irrational to me in the light of day :-[... wish I could turn my mind off at night ..
it would help my sleeping or lack there of tremendously
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Hi RichardS - i want to say welcome, too. Sorry if you have to join this club, but there are fantastic people here, keep reading!
Soundy - glad you wrote down your thoughts. I share some of them with you. The other night, as i was going to bed, i had the worst dizzy spell i can remember ever -room spinning and it wouldn't stop. I wondered - is this the new me? I am a traditional wife and mother, but, with my children grown, i enjoy working now outside the home. Don't want to imagine giving that up either, but there is always that possibility.
My oldest daughter reminded me that she has adjusted her life since a bad car accident as a teen. (She broke both her legs.) We, as parents were thankful she was alive! She said she was slipping and sliding around in a recent snowfall - just has to adjust to her not-so-steady knees - and at 24 yrs. old, i feel for her. Fortunately, after the car accident, we adopted this saying, 'what will it matter in 5 years?' She reminded me of this - and to keep vigilant about my own health in the coming days.
To me, it sounds like you are focused on those things that matter, like your family and joy of volunteer work.
I wish you all the best - my thoughts and prayers are with you and your family.
Sue
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I am new to this sight (How I wish I had known about it alot sooner) I had a 3.7 cm AN removed in April of 2007. I was told you need it removed or you will die in the next 2 months. Being a single mother of 2 children I freaked out and had it removed 2 weeks later. Like so many of you I am in mourning of my old self. I went into surgery as me and came out someone totally different. I have alot of issues to deal with such as deafness (one sided) facial paraylsis, vision problems, balance issues, tinnitus, cronic pain, headaches, night mares along with night sweats exhausten and severe depression. My family and friends think because I look okay on the outside I am fine on the inside. I should get over it and go on. WRONG. I feel as if I don't know who I am and I don't know how to adjust to this stranger that I have become. I know that god has not brought me this far to drop me on my face now and I am thankful that I am alive but, not being able to talk to someone that understands what I have been through is a very lonely place. I pray every night that I will wake the next morning and everything will be normal again. I am beginning to wonder if there is such a thing as normal?
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I am beginning to wonder if there is such a thing as normal?
Hi Golden,
There is at least such a thing as a new normal. It is not quite the same as the original, but once you get used to it, it works.
Welcome to the forum, I hope you will stick around and chat with us. There are lots of discussions on the issues you have described, some of them might be useful to you.
Steve
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Hi Golden! Please don`t give up. Try to get into a specific lifestyle consisting of good nutrition (vitimins minerals and herbs) exercise, long walks, arobics, resistance training and mental actives that stimulate positve thinking, chess crossword puzzels. good movie, etc Try and start there and progrss into whatever endeaver comes your way to make your life more better. It can`t hurt! + stay in tune with this board and organiztions like ANA. The body has a way over time to heal. Wishing you the best, Mickey
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Golden:
For me the best way to deal with my issues ( balance, hearing loss, headaches, etc.) is to take it one day at a time and one issue at a time. First, I went to physical therapy to help improve my balance, I walk 2.25 miles almost daily--also for balance. Then I got a hearing aid to see if it would help. Now, I am seeing a neurologist to help me with the headaches.
Even after physical therapy, I am not 100%. The hearing aid helps, and it has helped me realize how far gone my word recognition is in my right ear. But it's great for directionality--I never thought I would get that back.
Little by little I am scratching these items off my list of issues. It's not that they've been resolved and I'm back to my old normal. What this is doing for me is helping me move on. I'm getting closer to accepting the new me knowing that my issues have improved and knowing that I have done my best to resolve them. Along the way there have been new issues that arise and some that I didn't expect to get resolved that do get resolved.
Then there are times that I remember that the new me is not that bad off. Before my surgery I bought a few scarves in case I needed them after surgery. I used them once or twice, but I really didn't need them. Then I forgot about them. A few days ago my sister told me a friend of hers is a cancer patient and wears a hat that she borrowed because she doesn't have the budget to purchase her own. I was more than glad to pull out my scarves and donate them to her. Most importantly, I was happy that I never needed them.
Hang in there and take it one day at a time.
Syl
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Welcome Golden,
You are amongst a group that understands. All the things you are dealing with many people here are dealing with and will understand. What we all have in common is we have walked in similar shoes. Family and friends no matter how supportive, helpful, loving and thoughtful cannot fully understand the strange reality we live in. Just recently I have started accepting my new normal I realized I needed to go through the stages of grief. The amount of time that takes is individual for sure.
In addition to life's normal requirements, my feeling is start by doing things you can do and you enjoy doing. After I some experimentation with different interests I started finding things that challenged me yet I could conquer. I am building on that and getting better and better. This helps my attitude immensely. I have some of the old me but it has been altered to fit the new me. I would try not to stress too much about trying to do it all.
As for life's routines, I just try to prioritize and realize what doesn't get done, who will care in 100 years? It has been hard to let go of some of the control of my life and life's path that I used to have. I really try to stay one day at a time. If things are bad, one hour at a time. I try to stop and reflect on the really amazingly good things in my life that I used to take for granted. For instance, on days I feel only a little imbalance I feel the freedom of being able to have more balance and am thankful for it.
Hopefully, something in what some of us says gives you ideas, comfort or just the feeling of not being alone. (SUCH a blessing all in itself!).
Take care,
Mary
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I'm still pissed off at the new me, so not exactly embracing much, but, here is a quote that a friend sent me right after surgery:
It is in the quiet crucible of your personal, private sufferings that your noblest dreams are born; and God’s greatest gifts are given in compensation for what you’ve been through.
-- Wintley Phipps
Hang in there, all my AN friends.
Marci
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Marci - from Wintley's lips to God's ears; wonderful things happen if you're open to them....
Always good thoughts, Nancy
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Marci,
I know how you feel. I guess you expect that after you have the AN removed you should be better because the tumor is gone. I was raised that when you fall off the horse you get up brush yourself off and get back on. Well unfortuantly, that is not the case. I tried that but, I now know I have to clean the dirt out of my mouth first before I can even attempt to climb back on. How do you go about that? I do not know. Everyone is different in thier recovery. It has been 21 months post and I am angry along with alot of other emotions. It does make me feel a little better knowing that this forum exsist for AN patients and people can relate to me and what I am going through and I am not alone. Good luck on your journey to recovery.
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Dear Faith40.......What an inspirational post.......I printed it out so I can read it as often as needed. I face most of the issues you do (4 years out from CK) my life has totally changed......from a very active one to a very slow pace. I live in the countryside so am now kind of isolated as my home is really not on the way to anywhere...........it's a beautiful view though. I am 69 and a widow and live in a very nice home......it's much to big now that all the kids are grown and gone. Your words on scripture were awesome for me...........soooo encouraging and uplifting...............Thank you for this very touching and meaningful post. Keep it up please!
Judy T
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I really mourned my pre-surgery self for the first time today. I was asked to be on the board of directors for the AR Ag Council and today was the first meeting I attended, so I was meeting a lot of new people. I would normally be very self-confident and outgoing in that situation, but I found myself feeling very shy and awkward because I couldn't smile. I had to struggle not to cry, right there in the middle of that room full of strangers. The SSD was a pain, but not really that big of a deal. It was feeling like I couldn't connect with the people I met that made me so sad.
I wonder what the older lady who walked into the bathroom while I was pumping breastmilk thought about me... <evilgrin> She may not have even noticed my face, over the horror of seeing me with my shirt hiked up and hooked up to the pump. ;-)
Vonda
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Vonda,
I like the distraction method that you've used. I'm sure that lady never noticed anything but the breast pump. Do you think this would work for those of us past our childbearing years, with no babies in tow? :P
I've also had to get used to a new me in public. Because of the numbness and distorted feeling in my mouth, the new me has to work very hard to speak clearly, not spit, dribble my coffee or wine, etc. The old me (a classically trained singer) was very proud of the way I could speak in public even whilst drinking and eating. Not to mention good diction and all of that. I work hard at this every day at work (where talking to people is a major part of my job) on the school board (even harder but I haven't quit yet), and in social situations. I don't like it but there it is. I don't have a choice. Well, I suppose I do have a choice. I could live my life under a blanket but I just refuse to do that.
Best,
Marci
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Speaking of speaking ...
I can't talk as clearly as in my words are jumbled and out of order and I toss the word refrigerator
into the conversation no matter the subject ... :D ... it bothers me when talking to people I don't know well ...
friends and family have gotten used to me and my knew speech ...
I have developed this habit of talking to myself , singing and repeating tongue twisters ...I do this when I am
in the truck alone or at home alone...I figure practicing would help me talk more clearly to others ...
this was fine and dandy until on of my 28 year old twins came into the house and I didn't here him...I was in the
living room talking up a storm and he was in the hall peeking in listening... I caught him out of the corner of my eye
and like to have had a heart attack... he thought I had flipped my lid ...told him nope ...just practicing ... I don't
think he was convinced that I hadn't lost it ... I think I need to take his key away from him...he said he knocked but
I never heard him ...
living in the sticks I now keep my door locked ... my old dog that died last April warned me if anyone was coming
toward house ... we moved Jack from the barn to the house to bark for me ... he barks at possums passing through
at night but wags his tail and invites any people that show up to come into the yard... >:( ... this is a part of the
new me I don't like ...I am not exactly scared here by myself but kinda uncomfortable sometimes because I don't
hear as well ...
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jeez, Soundy, that would have scared the bejesus out of me ! ! - All of a sudden seeing someone in my home - WHEW ! !
As far as speech is concerned, I do make an extra attempt to speak clearly, it is hard work but worth it.
Always good thoughts, Nancy
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All my grown kids have a key ... so any could sneak up like he did ...well he didn't sneak up but I
had vacuum on and just didn't hear him ... the girls startle me from time to time and they live here :D
I need to hang some jingle bells from ceiling by doors so I get a warning jingle
And I guess I will continue talking to myself for practice
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This is an interesting thread. I'm 3 1/2 years post -op now. I've gone through the stages of grief and have finally arrived at acceptance. Leaving the hospital with a drooping face led to a lot of sadness. I knew it was a possibility going into surgery, but only a 4-5% chance. The same for facial numbness. Lucky me, I got both! I have had some good improvement in my face over time. It's still not back to "normal", but I can accept my new normal. I've become more patient with myself. In the past I would get anxious about arriving places on time. Now I do my best to still arrive on time, but if I'm late, hey I'm late. It's not the end of the world. I have single-sided deafness, but my TransEar helps a lot with that. I've adjusted to my eye. On days when I'm feeling lazy I put ointment in in the morning and am good for the day. I'm extremely thankful that I didn't get headaches. I wish I could wave a magic wand and make everyone's headaches disappear.
Jean