ANA Discussion Forum
General Category => AN Issues => Topic started by: Sue on July 04, 2007, 01:15:44 pm
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Okay, I'll start a topic. So it's been since the fall of '04 since I knew I had something wrong, and March of '06 when I found out that it was an acoustic neuroma. I had my GK, and I'm trying to get on with my life - PAND (post AN diagnosis).
I'm probably going to answer my own question because maybe this depends on the residual symptoms that one has to live with....but has any of you actually gone through the day without thinking of your AN? I was at Costco the other day and I went in, my TEEEEEEEEEEE* keeping me company, the facial numbness bothering me, especially around my eye, the oddball taste in my mouth, my tongue slightly "scalded" on the AN side, the slightly "off kilter", "out of body", "un-focused" mental junk going on and I thought...."Well, I suppose I'm the only one in here who has an AN!" And not in that "aren't I special" way, either. I go to the mall, and think the same thing. I'm driving along thinking about regular things then the symptoms that tag along with me where ever I go, bubble to the top of my consciousness and say "Hey! Here we are! Don't forget about us!" And I want to throw the whole darn bunch of them out the window and run over them a couple dozen times. Perhaps the hardest part of this whole thing, for me, is learning to live with all of these "monkeys" that are my constant reminders that I have a dying tumor in my head. Of course, then I feel guilty because I don't have terrible things going on...no head splitting headaches, no facial paralysis. But we've discussed this before...even though this isn't the worse thing that can happen (whatever IT is), it may be the worst that has happened to you (so far!). So, I'm dealing with the worst thing that has happened to me so far with my AN and I'd like to take a vacation from those critters that keep following me around.
So...a little bit of venting and a little bit of a question. How do you all push whatever symptoms you have down and out of the way....What's the best MIND OVER MATTER techniques?
Sue in VancouverUSA
* My aunt and I were out in the country awhile back and she said...Oh it's so quiet and peaceful. I said, Yes, I suppose it is. TEEEEEEEEEEEEEEEE. >:(
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Okay, Sue, I have a large mass of blood vessels inside my liver that I have known about for 12 years. I go for nuclear scans and ultrasound to "watch" this thing. It is a hemangioma. I've not submitted to a biopsy. It is just there. If it grows I could need some very serious treatment. I learned to live with this liver tumor. And I have learned to live with the post op residuals of Translab.
I feel most able to forget myself when I am busy with some other person's needs. I guess this is called fulfilling my life task. Now, I am dealing with recent news of another aging issue. A few more visits to the doctor and more flowers to tend. Life goes on and the birds keep on singing. Yes, I am able to forget my AN. I have learned how to let go of negatives and tell others about the positives. It happens. God Bless!
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Hi Sue,
Well, I think you know me well enough... how could I not chime in on this one? Great question....
For me.....as Boppie notes, I try to keep busy and do for others... sometimes I succeed, sometimes I don't.... but, the more I keep busy, the more I tend to "forget" about my AN (and other medical) issues.
As many of you know my family medical history (as well as my own medical history), life is too short... and I take my AN (and other medical) reminders as it helps to keep my spiritual side "in check". So, when I have those times that symptoms decide to crop up (more often than not), I take them as a reminder of the road I travel, that I can conquer it and yes, I even "forget" about it from time to time as life holds my attention in other means that allows me to forge forward.
Yes, I OD'd on coffee today... sorry if any of that didn't make sense.
Infamous huggles to you all!
Phyl
(P.S. Boppie, I had a liver hemingioma diagnosis last year... like you, "watch and wait".... we're not just AN twins!)
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I have dealt with Barrettes Esphagues for years. It is a very serious pre-cancer to Esphagueas cancer. I've been on medicine for it and endoscopies to check it. I don't think about it at all, only when I have a painfull attack. But the AN thing is always on my mind. And I think its got alot to do with the symptoms that never go away. And because we all seem to have multiple symptoms is a reason to. I hope the day comes maybe after a few years of MRI's under my belt that it too will be in the back of my mind.
mema
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Phyl, how strange that we have the same boogers in our livers. I have been told we share this tumor with 20% of the population. Discovery is usually accidental. Mine has shrunk a bit. Doc says it is Estrogen related. At least age brings something good, in the shrinkage department, I mean. ;D
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boppie i like your outlook,life does go on
hell ! i quit smoking and look what happened.
i still have 2 percent
up there,scared to death that i will have to go through this
again,what if you get it on the
opposite side?
so many what ifs.i guess i've
learned lifes too short to dwell on it.
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Sue, I can honestly say that today when I was trying to get the bathroom sink drain unglogged for about three hours I did not have one thought about my AN.
I think the key is just keep doing whatever you can, stay busy, and don't dwell on the things that these little buggers cause.
I'm still learning this too, and I have to be reminded sometimes.
I went to a funeral yesterday for a 52 year old lady who found out she had lung cancer just a few weeks ago. Her youngest daughter is getting married this Saturday. As the commercial says life comes at you fast sometimes and death too. So I was reminded to count my blessings once again and give my wife a few extra hugs.
Hang in there,
Rich
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Hey Boppie, purely, like you, found by accident while working my pancreas issue during MRI and CT Scan.....the toss up was... was it a cyst on my liver or a hemingioma.... results show hemingioma (gawd, I hope I spelled that right!). Guess as we get older, they tend to find more lumpy-bumpies when you least expect. I've placed a retail order for a new body... it's being made overseas and hasn't arrived yet... I wish it would! ::) Phyl
Phyl, how strange that we have the same boogers in our livers. I have been told we share this tumor with 20% of the population. Discovery is usually accidental. Mine has shrunk a bit. Doc says it is Estrogen related. At least age brings something good, in the strinkage department, I mean. ;D
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Sue interesting topic...no question keeping busy will help us concentrate on the task at hand and basically forget about most of our problems. Each of us experience life in different ways. Some of us have had very little health problems and some have experienced a great deal. My husband never has had a stich in his 54 years of life until last week when he had some cancer removed from his arm. For him even though this was minimal compared to what the rest of his family have experienced - it was and will be a small reminder to him that he is getting older, he needs to wear sun screen and he needs to constantly check his skin for other cancers.
For me what helped me get thru this past year (besides my relationship with God and prayer) was setting goals and working towards achieving them. I believe goals will help us with small and fulfilling rewards and accomplishments and draw our attention and focus from ourselves to others or activities that help us achieve goals and hopefully be a blessing to others.
I think about my health issues about 100 times a day (well maybe not that much) because I can't hear on my left side, I have double vision as well as facial paralysis, my head feels wierd as well as people asking me how I am doing constantly. However, I think about how blessed I am and how remarkable brain surgery is compared to other types of surgery. We really are fortunate we live in these times and are able with technology to remove or zap our tumors out of our head. I still am amazed a year ago I was in the hospital feeling horrible at this time with my second CSF leak surgery, just got over meningitis and a pic line in my arm having administered antibiotics 6 hours a day. Thank goodness time does erase some of the bad things that happen in our life! I like to think what we've been thru will help us to help others in some way.
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Sue, is TEEEEEEEEEEEEEEE your tinnitus?? Except for SSD I was totally asymptomatic after my trans-lab at House, Thinking that AN I had was no big deal, as SSD didn't bother me. Then, 6 months ago, the tinnitus started in my dead ear, and the taste disturbance. This tinnitus is extrememly disconcerting, and I became extremely upset. I had long talks with Dr. Brackmann and my local Dr's, and now I realize that I just have to accept this new reality of who I am. I don't forget about it or rant and rave anymore, but I have a new reality. I am now Sam Rush, with hypertension, color blind, and now with tinnitus and taste disturbance and SSD. BUT, I can still work in my medical office, work part time with the police, ride my horse, motorcycle, and bicycle, and still play golf badly. My children are in good health, and I'm about to become a grandfather for the first time.
So, is the glass half full, or half empty?? It is 90% full !!!!!
Do I think about AN? Constantly as this tinnitus won't let me forget it.
Has it ruined my life?? No, I am pretty much the same person.
Good thread, like the venting one.
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I believe that my constant low pitched and sometimes hight pitched tinnitus in my reminder and primary menace. If the tinnitus wasn't there things could be easier. I could even forget the SSD. My children are a big help too because they are young and require lots of attention. This creates a good diversion. I think this is a great topic and one that we can all relate. My outlook usually is ...."It Happened, It Can't Be Undone, It's Something I Couldn't Prevent, Was Meant To Happen To Me... Despite The Very Low Odds, Have To Make The Best Of It Even When I Start Feeling Down!
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Thanks for everyone's reply. Always nice to hear other's perspective on our common problem. Well, yes, keeping busy and having your brain concentrating on something else is important. I can get busy and then the AN issues recede into the background. Sort of. And yes, the TEEEEEEEEE is my tinnitus. It's more of a ZZZZZZZZZZZZZZZZ I think. :D
I have diabetes and thats much more serious than my AN, and I do think about it and manage it the best I can..but IT doesn't intrude into my thoughts nearly as much as this stupid AN - or the symptoms thereof.
So, anyway....gotta run. Thanks for the encouragment. We all have our ups and downs and I guess I had a down.
Take care everyone.
Sue in Vancouver USA
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Good thread. Thanks for the idea, Sue.
I may not be the very best person to comment on this subject, based on the fact that I had only minor post-op symptoms. Not that this will stop me from commenting. ;)
I was one of those fortunate folks who went through life with almost no medical problems - until my AN symptoms led to a (rare) doctor visit and an MRI. That, of course, led to the discovery of a large tumor, lots of angst, microsurgery, radiation and now, almost total recovery over a year later. I am thankful to God for His mercies.
I do have a few lingering symptoms but they are mild and easily ignored. If necessary, I work around them. My balance is good, very functional, but not yet where it once was (and may never be, again, I know) but I generally have no problem walking, going up and down stairs, etc. I have a few small 'numb' spots on the side of my tongue, occasionally on my lip, but I can ignore them as they do not affect talking, eating or taste. My left eye (the AN side) will feel a bit scratchy (the dreaded 'dry eye') if I get too tired or find myself in a breezy or windy environment, so I try to get my rest and avoid windy conditions whenever possible. That is my 'workaround'. I find my SSD to be my biggest handicap, yet I've had it so long now that I've fully adjusted and have incorporated it into my life. I'm just thankful that I had excellent hearing for almost 60 years. My tinnitus is a constant that I block out of my consciousness, for the most part.
I'm rather pleased to be in at a restaurant or at the mall, just walking around, and thinking 'no one here would ever know I had major surgery last year'. I think of my current condition as one of triumph, not loss. My 'philosophy' is one of: 'This happened, I'm dealing with it and I'm doing pretty well, too'. I accept the hearing loss and the relatively minor lingering symptoms of the AN but I've made a real effort, as others have, of getting back to my 'normal' life. As a matter of course, I don't dwell on the fact that I had an acoustic neuroma, major brain surgery and extensive radiation. I don't try to deny these realities, I simply refuse to make my AN the focus of my life from this point on. My last MRI showed positive tumor shrinkage and visible necrosis. My neurosurgeon said my last neurological exam showed marked improvement. I feel great. As my signature says: life is good.
As a frequent visitor to this forum I'm well aware that not every AN 'postie' can be as sanguine. That only increases my willingness to be thankful and grateful to God for the outcome and to not allow less than a 100% 'perfect' recovery to be taken (by me) as some sort of insult. Hardly. I know the future holds an even further recovery and I look forward to that, rather than what I may have lost due to my tumor. Indeed, life goes on. How we choose to live it is up to us.
Jim
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No! My left side tingles, my an ear buzzes, my eye dries out, My head hurts most of the time, Noise is a PITA, extreme heat and cold seem to make it diffucult to function, I'm weak, get frustrated easily, hard to do numbers now, can't remember stuff, especially phone numbers ect...
Ok here's the bright side. I'm not dead, glad to be alive, no three or four day migraines, just a day or two. Can do most things on most of the days.
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The bigger the monkeys we haul around (those darn symptoms) the harder it is to forget about them. We don't have much choice other than to learn to live with the monkeys. Some of us have a little monkey, and some of us have gorillas! RcMoser I think you have a gorilla!!
Simplistic, I know...but now I'm picturing all of us with our different monkeys sitting on our shoulders, or on our head, or clinging to our clothes....just following us all around town. An interesting visual, I must say.
Sue in Vancouver USA
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Hi Sue,
My diagnosis was only a little over two months ago, and I've been thinking that I should be adjusting to the idea of having a little something extra in my head...but I confess, I still think about it almost all the time. There have been a few occasions when I've been distracted enough to forget, but then it came crashing back. I know I'm probably depressed, but I absolutely refuse to go back on antidepressants (too hard to kick). I'm giving counseling a try, but it's not really going anywhere.
And of course, there are the reminders. Vertigo, unsteadiness, bumps & bruises, and the never ending smoke alarm in my head, to name a few. Sleep doesn't offer much relief...when I finally DO fall asleep, I dream about the darned thing!!
I've come to the conclusion that I need to take some sort of action, so I've chosen to go the radiation route. I know it won't resolve all my issues, but waiting and watching is too passive for me. I believe that once I've done something about it, I'll be able to move past this thing and get my life back.
Gee, I kind of feel better after getting all that off my chest. Thanks for listening.
Betsy
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Hi Sue, I have yet to go a single day without thinking about this damn tumor..yes, i said a bad word. But I hate this thing. I t has caused me nothing but problem after problem, issue after issue and I wouldn't wish it on my dearest enemy. I used to live a very priviledged life and still some of it still is priviledged but the most important part of that life, which was "living well" was taken away from me in an instant. I have my very own private "PITY PARTIES" hidden in my closet so that my family won't see becasue they will worry about me and I want them to live their lives and not be burdened by me. I can honestly say that the most positive happiest moment came for me a year ago when my first granchild, Nicholas was born. He made me want to live. Every day when I see him I feel full of life and he makes me want to live to experience his life and have memories of us together. If it weren't for him I would pretty much just exist. I have had so many problems due to radiation damage that I used to ask myself why and now I ask why, why, why. I loved life, I lived life and I gave of my life to my community and friends. Now the friends are gone they flew the coup a long time ago when I could no longer satisfy their luncheon needs or fundraising activities. It is a pretty lonely life here with my little acoustic neuroma. I never imagined that at such a young age(I was 49 when dx'd) that I would lose al the fun, the travel, the people, the friends and even family(my sister accused me of being a melingerer when I could no longer entertain her because I had no energy, couldn't balance, had to use a walker to get around and she wanted me to sit by the pool with her but I was told by the doctor that I couldn't but she didn't hear that). I often wonder why I was put on this earth and what in god's name am I supposed to learn from this tragedy. So, to anwer your question, No, I never get to forget about this damn tumor(swear word again) because it doesn't allow me not to.
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I actually don't think about my AN most of the time as since I was 19 I have had Crohn's disease and that has been my major focus. The AN is a relative newcomer to my medical scene (since 2005). I am constantly aware of the ileostomy I have had since 2003. That was a curative experience as I am no longer sick from the Crohn's and my life is otherwise totally normal with no restrictions. My AN is in watch and wait so it stays on the back burner for now.
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I'll admit I think of this AN multiple times a day and at night if I wake up. It's hard not to with the tinnitis. With a repeat MRI due next month, it is definitely on my mind. A bit too much. This watch and wait mode is rough. I'm leaning toward CK even if it hasn't grown but I'm still at the point where that decision fluctuates almost daily. In some ways, I'm disappointed in myself. I thought I would handle this better than I have. The only other medical condition I've had to deal with is seizures (grand mal), that first occured at 21. For that, I've been controlled on medication for years so I don't think about it all that much.
It does help to stay busy. I've just got to set goals for myself so that I hopefully won't get bogged down so much with this AN.
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GoodTopic: Went too visit my Brother and Sister In Law last week while walking the dog. My sister-in-law made the comment I am not the same person I was. Geez. My head still feels wonky at times from radiation- I am losing hearing from radiation in my only heraring ear and you tell me I am different and changed. Wow-that was quite a blow. They say time heals everything-except these boogers will leave some kind of reminder. Some days I would just like too forget that I have this tumor in my head. With me my loss of hearing is the constant remider and possibilty of total deafness-how can one forget-but we must carryon with life and deal with the cards that was dealt too each one of us. A classmate of ours committed sucicide 2 weeks ago due too depression-so I look at this and say. You know in a way I am still blessed because I can still talk and think and eat and walk. So life is good-not great but good. Take Care All-Ron.
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Wow, Ron....I agree that we are not the same people as we were. Nobody is who goes through any kind of life changing medical problem. It changes us somehow. We have more to cope with and decisions to be made and new information about things we didn't even know about that suddenly is the most important thing we should know and even though we are the same people, this changes some things about us. If nothing else, I guess it makes us a little distracted from our usual way of life. I guess we need to realize it just takes time. Good Lord, look at those poor people who have been horribly wounded in the war - - coming back with missing arms and legs and horrible head wounds. They are the same people but changed in ways we can't even imagine. Same with us, most of us on a much smaller scale than that, of course. I wouldn't even suggest that we are on that same level, except for the very worst of our cases.
Hang in there, kiddo.
Sue in Vancouver USA
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Unfortunately, unless I am dead to the world asleep, I'm constantly noticing some symptom or another....so I guess that means I never forget because I'm constantly compensating for something. But do I let it rule my life? heck no. I am lucky in that I've had tinnitus since I was 15 or so and although I "hear" it, I don't notice it except for the couple seconds it may change pitch every once in a while. I've had hearing loss to the point of near deafness for so long that I adjusted to that prior to surgery. So I had two things going for me, I figure, so that I didn't have to deal with it suddenly post-op. I can think of only two "pity parties" that I've had for myself since surgery....one was when I was facing re-opening of my site to fix a CSF leak, and one was post vacation realizing that I had to give up some of my "do before I die" list because some things involving crowds and cities are just not fun for me anymore, and I felt the need to grieve that. I have good days and bad, and allow myself to be in the moment for both as I think no matter what it is you feel you should allow yourself to feel it. But I never "forget".....and have a feeling I never will either. But it's OK....life goes on whether we want it to or not so I will try to have more good days than bad! :)
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Only ten days post op I may be speaking too soon
Before surgery I didn't know it was there except when I went to peek at it thru MRI in
the watching years
I have always had tinnitis... well since a concussion with amnesia at age 4... I have slept with something
making noise to mask the teeeeeeeeeeeee (thanks for great description) as long as I can
remember... now with all hearing gone on that side nothing gets in to make it less...I definitely think
about the AN more now that it is gone than when it was in residense... :-\... I am waiting for other
things to crop up as I have been told they may
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Like Gennysmom said 'only when I'm sleeping.' Unfortunately the issues from facial paralysis don't let me forget.
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I have facial paralysis and numbness which causes a lot of eye problems. I'm reminded every two hours when I put in my eye ointment. But there are times when I'm very into things like good books, things that totally occupy my mind. I'm learning to accept the after-effects. I remember laying in my hospital bed and realizing this body is not all there is to me. I felt a real separation between my physical body and "me." It gave me a peaceful feeling. I try to get back to that as often as I can.
Jean
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I don't think any of us truly forget about our AN. Acceptence is the biggest thing, and it is hard. All of us had full lives before and yes everything is different now. I find this condition is totally a mental "game" on good days life can be so good and symptoms go hand in hand with our mental state. I no longer enjoy or involve myself in small talk. So for me a worse case synario is a gathering of people you don't know and trying to stand around keep your ballance, and decipher what anyone is saying amongst all of the ambian sounds. I have started to write on my calender when I have a good day, and I appear to be having more of them. I am 15 months post op and have suffered through 2 major depressions, panic attacks and almost turning into a " Howard Hughes" recluse. My marriage was almost destroyed too, but he hung in. If you have a good day, or a good 1/2 day make the most of it. I have also started to massage my face whenever I think about it, and It is starting to pay off. There appears to be movement, tingling and my smile is getting better. Trust me little changes make you feel like a million dollars. I don't think the recovery just "happens" I think you have to really push it along and try and think positive thoughts, and yes I know that is easier said than done. This website is my only contact with other AN's I think it would be so much better if I at least knew someone in the same boat. But I don't so I have to find my own reason for all this crazyness. Nikynu, you sound like you are really in a depression, are you seeing a therapist ? Reading your blog you reminded me of myself. My dizziness is still bad, so the other day I did a silly thing. I bought a pair of shoes with heels. I got them from Payless [ so they were cheap ] I walk around the house in them and even though I am not that steady it makes me feel great. I am planning on wearing them out sometime [holding onto my man of course] I have decided that I am going to be the one in charge of my new life, and not let this "uninvited guest" cause any more havoc. I 'm sure if my neighbors saw me staggering around in heels they will think I am Plastered, but who cares if it helps me that's all that matters. I think we should all put forward any suggestions we have, no matter how crazy. It might help someone else.
Good luck
Lainie
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Yes, me too, the TEEEE is probably one of the worst post op symptoms to deal with. There are days I just want to scream, WILL IT JUST STOP< JUST FOR AN HOUR. just one hour of silence would be nice. But then I settle back into the routine of dealing with it day in and day out. Just part of the AN deal I guess.
patti ut
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I according to the doctors am doing exceptionally well... :o ... if I am well I would hate to see
what it would be like for me to be doing poorly...
As I said before I have always ( 42 years ) lived with the teeeeeeeeeeeeeeeeeeee ... but now
with hearing gone on that side no way to mask it and after only two weeks it is driving me nuts...
I have found that I can get involved in a book it doesn't seem as loud but get a head ache if I read
too long...
I have no visible facial paralysis but last two days my right eye opens several seconds after the left and
when drinking I am dribbling out right corner of my mouth... I see surgeon for follow up Tuesday and
these are top on my list of things to question him about... I feel like I am back sliding... I left hospital
in a high state because everything was going so well ...
I think I had a point to make but one thing I am experiencing is losing train of thought... I know I
am not going where I was headed but have no way to stop it or redirect... even talking I will go
off rambling about something else instead of saying ... I forgot what I was saying... don't want to
let people know I am confused :o
Nothing to do with subject but ... today I went pillow shopping ... with 6 pillows I could not
find one that didn't feel like it was touching my head too much... I got a memory foam pillow
surrounded by micro fiber down alternative... I had my son handing me pillows to lay on an empty
shelf and lay my head on them ( still in wrappings) I narrowed it to three than had him against his
wishes ( 27 years old and thought he was beyond Mamma's demands ;) )test them... we both
agreed on this one ... as he put others up he asked me did I know that it was $29... I told him I
was worth it and I left the store cuddling my new best friend in bed...
OK... maybe a little on subject... when you find something that has help you ...share it ...
I was getting head and neck pain due to not getting comfortable ... I took a three hour nap with
my new friend ...
first good rest I have had with out drug assist since surgery
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Hi
Thanks to everyone for posting on "my" subject. It helps to know I've got brothers and sisters out there in the world who are trying to deal with this also.
Well, I will admit...the "keeping busy" part is certainly true. My husband and I went out of town to stay with my family and attend a wedding. We were busy from Friday late afternoon to just now...Sunday night and we had a good time and had a nice visit and saw a lovely wedding and my AN took a back seat for quite a while. Only a couple times did the hearing problem bother me. Lots of things were outdoors and it was just mostly a very pleasant weekend and I think I did get a little vacation away from IT. So, I think that's the way I have to go...just be on a continual vacation, traveling and visiting in the great outdoors!! ;D
Sue in Vancouver USA
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When I first found out about the AN some friends and family members thought
I should quit alot of things... I work with both Cub and Girl Scouts and volunteer
at school ... I work around our farm some and sub at school...
I named mt tumor Bennie and plodded on with this in mind....
I have it... it doesn't have me... this has got me through alot
Had I stopped being me I would be in a world of hurt now... I continued as usual
with interuptions for tests , MRI etc ...
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Hi everyone
I have pretty much forgotten about my AN for at least three weeks now . I have been very busy planning retirement with my husband and making all kinds of plans of extensive travel by sea and land . I came to earth witha bump when my husband reminded ne that sometime in the future I would have to put time aside for my next MRI scan ! I was pretty annoyed with him for reminding me but then realised that maybe he thinks about it more than I do . I have been very lucky to have very few symptoms to remind me of my little hitchhiker only some tinnitus and the very occasional dizzy spell . I keep my fingers crossed in hope that it will stay that way .
Best regards Kat