Oddball

[foodsmarts]

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 “Oddball”

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.

[Kaybo]

Neat poem, Foodsmarts - tell us about yourself...are you new here?

K

[foodsmarts]

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

[CHD63]

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

[foodsmarts]

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

[CHD63]

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???   

All my best, Clarice

[sgerrard]

I've requested radio surgery with Dr. Chang at Stanford as soon as I can get in.

Good pick. Welcome to the forum.

Steve

[dufreyne]

Wonderful poem.  For those who have experienced this reality, it touches you.

Dufreyne

[Kaybo]

Dufreyne~
Haven't heard from you in a while - how are you?

K

[moe]

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

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

[ernie h]

foodsmarts, love the poem it has special meaning.to all of us i'm sure.welcome and best wishes to you.

[foodsmarts]

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

[foodsmarts]

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.

Helen

[Jim Scott]

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

[sgerrard]

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