ANA Discussion Forum
Post-Treatment => Cognitive/Emotional Issues => Topic started by: foodsmarts on July 15, 2009, 07:44:50 am
-
Walking straight.
A challenge? Who would guess?
The brilliance of our gyroscope -
Its praises unsung, is a quiet miracle.
I stagger now and list left-wise.
Loopily, my destinations reached.
But I see eyebrows raised…
My aura broadcasts “Oddballâ€
Aging brings gifts in its wrinkled basket.
Becoming invisible was an unexpected pleasure.
Different again - I’m sticking out.
Looking crazy, looking drunk.
What did you say? I can’t hear you either.
Whisper something in the good ear.
Something kind.
-
Neat poem, Foodsmarts - tell us about yourself...are you new here?
K
-
Hi. I've been lurking and posting a bit. Diagnosed with a small AN (5.4 x 3.2 mm) almost a year ago. Within 8 months, mine almost doubled (1.1 x .5 cm) and I went from having a 40% hearing loss and tinnitus to experiencing an array of symptoms very quickly. Dizziness, staggering, pain behind the ear, warped tastes (mostly sweet), heightened tinnitus and sudden almost complete deafness. Everything came on in about three weeks. Of course my doctors (after the second MRI and hearing tests) recommended intervention. They suggested Trilogy which is what they use at the USCSD medical center, but I'm convinced cyberknife is a better choice. I've requested radio surgery with Dr. Chang at Stanford as soon as I can get in.
The forum has been incredibly helpful with choosing treatment - and just reading about what others are experiencing and how they cope.
I'm not a poet by any means, but my sister was. Deceased, she haunts me from time to time and yesterday was one of those days.
Helen
-
Helen ....
Loved your poem ..... looks like poetry runs in the family!! :-* ..... and I can identify!
My thoughts and prayers are with you as you await your treatment date.
Clarice
-
Thank you. When I read about what some of you have been through....whew!! I feel like a baby complaining about my tiny but seemingly ferocious (symptom-wise) AN, which is why I haven't posted much.
Clarice, it sounds like you manage your symptoms well. I've read some of your other posts particularly regarding tinnitus. As a relative
newbie I want you to know how appreciative I am of your input, encouragement and positive thoughts.
Helen
-
Thanks, Helen .....
As you well know, the AN journey is not easy for anyone .... but I have found that the more positive I make myself react, the better I feel. :-\
BTW, my mother and our oldest granddaughter (4 1/2 years old) share your name, Helen ...... does that make us related??? ;D
All my best, Clarice
-
I've requested radio surgery with Dr. Chang at Stanford as soon as I can get in.
Good pick. :) Welcome to the forum.
Steve
-
Wonderful poem. For those who have experienced this reality, it touches you.
Dufreyne
-
Dufreyne~
Haven't heard from you in a while - how are you?
K
-
Helen,
Sweet poem and thanks for sharing :) What we experience does make us look like "oddballls." No one can see what's going on inside us :o
Sometimes I feel like an "old" person with the hearing and balance problems, and I'm young!
Those sympathy nods from older folks crack me up! "No I did NOT have a stroke" I want to say, but I just give them my half smile and keep going............
Let us know how you continue to do on your journey with your treatment.
Lots of nice support here.
Maureen
-
foodsmarts, love the poem it has special meaning.to all of us i'm sure.welcome and best wishes to you.
-
Hi all. Thanks to everyone who read my one and, probably only, poem. My muse waited a long time to strike - coaxed out of hiding by the AN. Cheri, I'm highly complimented that you would like to share it - please do.
I now have an August 17th date in Stanford with Dr. Chang and am feeling excited and frightened at the same time. Radiation is a scary concept for me and my dreams have been dominated by the notion of being overcooked in the microwave. In the strange dreamy paralyzed state where you have to act but can't move, I try to scream out at a bodyless hand turning the micro dial...."the correct setting is "4" NOT "5". Fortunately I jolt awake and can still laugh at this recurring 7-11 culinary nightmare. As the date gets closer and closer, I'm hoping the HAND gets the message and sets the darn machine properly so I can get a good night's sleep.
This group is so supportive and informative. I find myself "dipping" in daily for a quick read and update on everyone's progress/comments/advise and observations. It is really so comforting and morale boosting.
Thanks for being there...
Helen
-
Hi. My ck procedure at Stanford was about a month ago. It was incredibly easy and so far I have experienced little change - as expected. I do start vestibular therapy next week and hope to get a better grip on the staggering and dizziness. My only complaint at the moment is fatigue which I've suffered since the advent of the an. I'm 66, so no spring chicken, but I used to pre an) stay awake until 9 or so after a full day. Now I tire very easily and fall into bed after dinner, dozing and reading. I seem to need 8 hours sleep plus 3 hours of doing nothing in order to recharge the batteries.
Other than that one complaint, life is good. :D
Helen
-
Helen ~
Thanks for the update. I'm pleased to learn how well you're doing in your recovery!
I'm not at all sedentary and we're the same age. However, I do tire more easily than I did prior to my AN growing big enough to make me notice the resulting symptoms. I tend to poop out around 9-10 P.M., and often fall asleep (for short periods) watching TV and much to the amusement of my adult son (age 30) when he visits at night. I attribute some of that to aging, of course, but some to the fact that my brain has to work harder to keep me balanced (I'm good) and hear out of only one ear, which can sometimes be a strain. I attended a wedding reception last night and struggled to hear the people around me over the music and din of 50 others all talking at once. It was tiring, as I expected it would be. This is not terribly unusual, especially for us more mature folks. I view sleep as a restorative and don't mind getting as much as I need.
Jim
-
Hi Helen,
Glad to hear the CK went well. Don't be surprised if you hit a little bump sometime in the next 6 months, but it sounds like you are well on your way. I notice the fatigue 2 years after treatment, but in a somewhat odd way. I go through the day with normal energy, and make it well into the evening as well. However, at some point late in the evening, I suddenly get very sleepy. I have only a few minutes to get ready for bed before my brain decides that nothing matters except lying down. More than once that has been on the couch, or on the bed still fully dressed. On the bright side, I do sleep well.
Best wishes,
Steve
-
Helen ....
I've been away from the Forum for awhile. Glad to read that your CK was rather textbook. The fatigue is pretty normal for almost all of us. Keep posting to let us know how you are doing.
Clarice
-
Hi All. I'm doing pretty well and have begun vestibular therapy. Since CK my hearing has remained about the same, taste is getting back to normal most of the time. I have periods of screwed up taste perception but most of the time, taste is normal. My big issue at this time is balance and the secondary one is adjusting to the single sided hearing which apparently just takes time.
After 9 months or so, I think I've worn out most of my friends and family. They always ask hopefully, "Are you getting any better?". I've learned to say yes and not to elaborate on any of the problems. Illness has a shelf life and we can expect people to simply lose interest after a while. Thank God for this forum to let off a little steam once in a while.
-
Hi. I had a big day/night today. Had a wonderful day at the Huntington Museum and Gardens (including a tea) near Los Angeles and drove home on really crowded freeways IN THE DARK. Here in the greater Los Angeles/San Diego area, our freeways are crowded, accident prone and if any space opens up everyone goes 80 miles an hour (or faster). It's a challenge in broad daylight negotiating lane changes (the fast head turning has made me dizzy ini the past) and I've been avoiding night time driving completely.
I have to attribute this incredible leap forward to the vestibular therapy I've been getting. I'm doing the exercise where you focus on a letter of the alphabet, placed against a busy background, and move your head back and forth quickly, keeping the focus at all times. It seems to be working.
I'm also getting used to the staggering and to peoples' reaction to me - I guess I've adjusted as I don't notice it as much or maybe just don't care. I'm so grateful to be able to get around and enjoy my life, that a little staggering is a small price to pay.
Speaking of which we had a perfect day here - about 75 degrees, some white puffy clouds were banking up against the mountains and the garden at the Huntington is loaded with gorgeous roses and oozing fragrance. We stood like dogs, four of us, inhaling the fragrance and soaking up the beauty. The grand finale was a walk around the new stunning Chinese garden.
Life is great!
Helen
-
Helen ~
Thanks so much for your ultra-positive update! Congratulations on driving the L.A. freeways and of course, your pleasant visit to the Huntington museum & gardens. My wife and I visited the Huntington on an L.A. vacation some years ago. We once lived in North Hollywood (mid '70's) and I'm familiar with the Los Angeles freeway chaos. Kudos for successfully handling it - at night!
I admire your buoyant attitude and hope that things just keep on improving for you! :)
Jim
-
Helen,
I adored your poem and have secretly renamed it "Ode to a Wonkyhead."
You need to meet Sue who is our Poet Lorry-ate. She's written some great stuff as well. Glad to hear you are finished with treatment and on to your new life!
Hugs,
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate-3.gif)