Well I just got done writing a post about how tomorrow was my long-awaited BAHA day. Unfortunately, the stars are not aligning for me this week. I just got a call from the audiologist's office basically saying, "oops, we screwed up and we don't have your BAHA processor after all.". (Insert long string of curse words here.) And, of course, they don't know how long it will take to arrive, so I have no idea when I will be able to reschedule. So, it looks like it will be awhile longer before I have a shot at stereo hearing.
Stay tuned...
Wednesday, February 16, 2011
Saturday, February 12, 2011
The Tunnel of Terror
Yes, I know, it's been a month since my last blog (wow, that sounds like the beginning of Confession doesn't it?) Anyway, lots going on here in the hinterlands of northwestern NJ. It is that time of year again for me (MRI) and that always makes me test the upper limits of blood pressure.
I am a claustrophobe. I mean, I have it REALLY bad - even reading about someone being in a small space makes me hyperventilate. Years ago, I had to get an MRI for my back. Not knowing the extent of my own terror, I sashayed into the imaging center and presented myself to the technician. She wheeled me into the machine ... and within 30 seconds, I was unable to breath. Whoosh. Out I came. Turns out that being able to tilt my head back and see out the top of the tunnel didn't actually help. I remember thinking at the time that I couldn't imagine how anyone could survive having their brain scanned in the Tunnel of Terror. I think I even felt some condescending pity.
So, you can imagine my distress 3 years ago when my ENT told me I needed an MRI ... of my head!!! Crap. My head in the Tunnel of Terror ... what could be worse? I demanded a sedative and then spent the next two weeks stressing about getting the MRI. Mind you, I wasn't the least bit worried about what might turn up on the MRI - after all, who the hell gets brain tumors, anyway? Well, you all know how that turned out. I survived the MRI and got "the call" the next day. Yep, brain tumor. Holy crap.
And, by the way, did you know that there is a special category of claustrophia just for MRI machines. Don't believe me? Go ahead and Google "MRI Claustrophia." Hah!
I am now a veteran of the brain MRI (I know, isn't it ironic that someone who is terrified to be enclosed in a small space has to get MRIs every year?) and I am here to tell you that it still scares the crap out of me. Yep, I still need to be sedated, and Willie still sits at the end of the MRI Table of Terror and holds my ankle. This is important because I need to know that I can be snatched from the jaws of certain death if necessary.
A few years ago, some well-intentioned person/s decided that developing an MRI machine that has a wider openeing and a shorter "bore" would be an excellent idea. And, it certainly is...for someone else. For me, there is no "bore" short enough, nor any tunnel wide enough to make me feel any less likely to die on the spot. Nope, I'm not falling for that "wide bore" crap again. That sucker is still terrifying.
So why am I writing about this now? Well, I just had my 3-year brain MRI last Monday (no scary white blobs - yay!!!!) And, now, lucky me, I have to get ANOTHER MRI this upcoming Monday - yes, on Valentine's Day. Happy freaking Valentine's Day to me. So while all of you are enjoying a nice romantic dinner I will be passed out on the sofa, spit dribbling down my chin, sleeping off the after effects of valium. Is it any wonder Willie loves me?
So would you please have a glass of something red for me? I'll be the one passed out in the corner.
I am a claustrophobe. I mean, I have it REALLY bad - even reading about someone being in a small space makes me hyperventilate. Years ago, I had to get an MRI for my back. Not knowing the extent of my own terror, I sashayed into the imaging center and presented myself to the technician. She wheeled me into the machine ... and within 30 seconds, I was unable to breath. Whoosh. Out I came. Turns out that being able to tilt my head back and see out the top of the tunnel didn't actually help. I remember thinking at the time that I couldn't imagine how anyone could survive having their brain scanned in the Tunnel of Terror. I think I even felt some condescending pity.
So, you can imagine my distress 3 years ago when my ENT told me I needed an MRI ... of my head!!! Crap. My head in the Tunnel of Terror ... what could be worse? I demanded a sedative and then spent the next two weeks stressing about getting the MRI. Mind you, I wasn't the least bit worried about what might turn up on the MRI - after all, who the hell gets brain tumors, anyway? Well, you all know how that turned out. I survived the MRI and got "the call" the next day. Yep, brain tumor. Holy crap.
And, by the way, did you know that there is a special category of claustrophia just for MRI machines. Don't believe me? Go ahead and Google "MRI Claustrophia." Hah!
I am now a veteran of the brain MRI (I know, isn't it ironic that someone who is terrified to be enclosed in a small space has to get MRIs every year?) and I am here to tell you that it still scares the crap out of me. Yep, I still need to be sedated, and Willie still sits at the end of the MRI Table of Terror and holds my ankle. This is important because I need to know that I can be snatched from the jaws of certain death if necessary.
A few years ago, some well-intentioned person/s decided that developing an MRI machine that has a wider openeing and a shorter "bore" would be an excellent idea. And, it certainly is...for someone else. For me, there is no "bore" short enough, nor any tunnel wide enough to make me feel any less likely to die on the spot. Nope, I'm not falling for that "wide bore" crap again. That sucker is still terrifying.
So why am I writing about this now? Well, I just had my 3-year brain MRI last Monday (no scary white blobs - yay!!!!) And, now, lucky me, I have to get ANOTHER MRI this upcoming Monday - yes, on Valentine's Day. Happy freaking Valentine's Day to me. So while all of you are enjoying a nice romantic dinner I will be passed out on the sofa, spit dribbling down my chin, sleeping off the after effects of valium. Is it any wonder Willie loves me?
So would you please have a glass of something red for me? I'll be the one passed out in the corner.
Monday, January 3, 2011
Beginnings and Endings
A new year - time for beginnnings and endings. Unfortunately, yesterday was a very sad day, one of endings. After nearly 13 years, 7 of them spent in our home, our beloved collie, Carrie, left us. In addition to leaving behind a lot of hair (hey, she was a collie, after all,) she has left a hole in our hearts that feels like the size of the Grand Canyon.
Pets bring us complete and unconditional love, along with guaranteed heartbreak (in the words of my grandfather.) Carrie became our dog in 2003, the day after Thanksgiving. Willie had always wanted a collie, and Carrie needed a home after her previous owner passed away. She was born February 24, 1998 with the rather daunting name "Clarion Millcreek Charisma." (Yea, you can kind of see why it got shortened to "Carrie"...) Bred with the intent of being a show dog, she didn't quite make the mark and was relegated to the status of breeder. Sadly, she also failed at that and ultimately became a pet. She had several homes before ours, which may have contributed to her anxieties.
Whatever the case, that day in November she became our very own Carrie - for better or worse, 'til death do us part. We suspect that fate played a hand in bringing this dog to our door at that exact time. She was what some might call a "difficult" dog - her anxieties never left her and frequently manifested in ways that were troublesome, leaving in her wake a host of chewed up cameras, eye glasses, wood paste, chocolate, lemon hummus, and humongous veterinary bills. We suspect that lesser people wouldn't have returned her to the rescue folks. But in spite of her "foibles" (or maybe even becasue of them) she was infinitely lovable and she was ours for "keeps." And, while she loved me, her sun really rose and set with my husband, Willie. Carrie always knew when it was time for him to come home from work and would be there to greet him with crazy barking and a tail that, if it went any faster, would have caused her to become airborn. Those are the memories that I will keep close to my heart.
Carrie has been in failing health for several months and we both knew this day would come, but in spite of what the head knows, the heart is never willing or ready to accept it. At the end, you do what you hope is right by the pet, and you suffer the heartbreak that follows. Her last meal, provided by the vet's assistants, was chocolate and roast beef, two things that were forbidden food, but oh so tasty. On some level I am sure she thought she was getting one over on us, and I suspect she was smiling in the way that only dogs can smile. And, I am also sure that there is lots of chocolate, roast beef, peanut butter and other delectibles in the great beyond ... on the Rainbow Bridge.
Johnny Depp's version of the Irish Blessing seems especially fitting for Carrie...
“May the wind always be on your back and the sun upon your face and may the winds of destiny carry you aloft to dance with the stars.”
And, by the way, Carrie - Phoebe the cat wants to know if you'll save some food for her...
Friday, December 31, 2010
Ciao, 2010
It's been nice knowin' ya, 2010. But now, it's time to welcome a new kid to town - Year 2011.
Ah, but 2010, you've served us well...
Not one, but TWO trips to Wisconsin to see famed facial therapist, Jackie Diels, who worked miracles with my face.
After years of saying "one of these day" for years we finally made it to Ireland! The sheep and the Guinness didn't disappoint, but the real highlight of the trip was meeting my acoustic neuroma pal, Lorenzo and his wife, Sheila. That was grand!
2010, you also finally convinced me to bite the bullet (or is it the Bolt?) and take step # 1 in getting a BAHA. Yessiree, I have a big ol' titanium bolt in my head, just itching for a processor... (sorry, 2010, but the processor will be 2011's job)
Willie and I celebrated our tenth anniversary - yep, still crazy in love with that guy. The first 10 were so good, that we are planning to hang in for another 10. This time, however, without any brain tumors.
Lots of visits with family, which we plan to continue in 2011, of course.
So, thanks, 2010 - ya done good.
Ah, but 2010, you've served us well...
Not one, but TWO trips to Wisconsin to see famed facial therapist, Jackie Diels, who worked miracles with my face.
After years of saying "one of these day" for years we finally made it to Ireland! The sheep and the Guinness didn't disappoint, but the real highlight of the trip was meeting my acoustic neuroma pal, Lorenzo and his wife, Sheila. That was grand!
2010, you also finally convinced me to bite the bullet (or is it the Bolt?) and take step # 1 in getting a BAHA. Yessiree, I have a big ol' titanium bolt in my head, just itching for a processor... (sorry, 2010, but the processor will be 2011's job)
Willie and I celebrated our tenth anniversary - yep, still crazy in love with that guy. The first 10 were so good, that we are planning to hang in for another 10. This time, however, without any brain tumors.
Lots of visits with family, which we plan to continue in 2011, of course.
So, thanks, 2010 - ya done good.
Tuesday, December 21, 2010
An Acoustic Neuroma Holiday
Another holiday season is upon us (how the hell did that happen??) and I am taking a little time to reflect on life. I am also reflecting on all my wonderful brain tumor friends and the myriad of funny things we share. Who other than you would understand things like…
Hugging -don’t you just hate it when you lean in for a hug and just keep right on going? Sometimes taking the other person down with you…
Bobbing and Weaving -you are walking along, minding your own business, looking around at all the great sites and suddenly find that you have veered into the road or off the trail. This causes a spurt of adrenalin which causes us to try to quickly course-correct which in turns results in stumbling, bobbing and weaving. All very entertaining for onlookers. Although I have noticed some of the mothers grabbing their kids and moving quickly away…
Drooling and Dribbling – and if your facial nerve is still feeling cranky, how about that drooling thing? Yep, always nice to find out that you have a spaghetti noodle hanging off your lip … and that it has been there for the entire meal because the lip/chin is still pretty numb.
Oil Slick – for those of us who have to keep gel in our eyes 24-7, don’t you just love it when you walk by a mirror and see that you have a massive gel-slick on your face? Honestly, don’t you wonder what people think? We should make up a really inventive story … any ideas?
Whirling Dervish – okay, one of my personal favorites. You are in a store and hear your name being called. You start twirling around trying to locate the source of the sound. Doesn’t work, so the person helpfully calls out “over here.” Great. If I had directionality, do you really think I'd be whirling around like a freaking idiot:
What I Think I Heard – ah, so many funny stories on this one. Ever notice how “chocolate” sounds just like “talk a lot?” or how “caller id” sounds just like “celery…” So, for those of you out there who aren’t single side deaf, if I respond to you in some completely inappropriate manner, just smile and continue.
Winking and Blinking – This is actually a great party trick! When I get tired my acoustic neuroma-side eye either stops blinking entirely, or starts blinking out of sync with the other eye. It’s pretty funny and it totally messes up other people who now don’t know what the hell you’re up to.
Nap Attack – Who among us hasn’t experienced that sudden, not-to-be-denied urge to nap. C’mon, fess up. Some of you have been seen napping at the library, at the coffee shop, on a park bench … really just about anywhere you can plant your butt for a spell.
Abutments – this is a whole new realm for me since I only got my BAHA abutment about a month ago. It sticks out ever so slightly from the side of my head – just enough to catch the edge of that nice knit winter scarf… or the neck of the sweater that I tried to yank over my head in a single smooth move. Hm. Do you think anyone will notice when I have an afghan hanging off the side of my head? Maybe I can color coordinate it to go with the spaghetti on my lip…
Gosh, who knew a brain tumor could be so much fun and so very entertaining??
Merry Christmas!
Hugging -don’t you just hate it when you lean in for a hug and just keep right on going? Sometimes taking the other person down with you…
Bobbing and Weaving -you are walking along, minding your own business, looking around at all the great sites and suddenly find that you have veered into the road or off the trail. This causes a spurt of adrenalin which causes us to try to quickly course-correct which in turns results in stumbling, bobbing and weaving. All very entertaining for onlookers. Although I have noticed some of the mothers grabbing their kids and moving quickly away…
Drooling and Dribbling – and if your facial nerve is still feeling cranky, how about that drooling thing? Yep, always nice to find out that you have a spaghetti noodle hanging off your lip … and that it has been there for the entire meal because the lip/chin is still pretty numb.
Oil Slick – for those of us who have to keep gel in our eyes 24-7, don’t you just love it when you walk by a mirror and see that you have a massive gel-slick on your face? Honestly, don’t you wonder what people think? We should make up a really inventive story … any ideas?
Whirling Dervish – okay, one of my personal favorites. You are in a store and hear your name being called. You start twirling around trying to locate the source of the sound. Doesn’t work, so the person helpfully calls out “over here.” Great. If I had directionality, do you really think I'd be whirling around like a freaking idiot:
What I Think I Heard – ah, so many funny stories on this one. Ever notice how “chocolate” sounds just like “talk a lot?” or how “caller id” sounds just like “celery…” So, for those of you out there who aren’t single side deaf, if I respond to you in some completely inappropriate manner, just smile and continue.
Winking and Blinking – This is actually a great party trick! When I get tired my acoustic neuroma-side eye either stops blinking entirely, or starts blinking out of sync with the other eye. It’s pretty funny and it totally messes up other people who now don’t know what the hell you’re up to.
Nap Attack – Who among us hasn’t experienced that sudden, not-to-be-denied urge to nap. C’mon, fess up. Some of you have been seen napping at the library, at the coffee shop, on a park bench … really just about anywhere you can plant your butt for a spell.
Abutments – this is a whole new realm for me since I only got my BAHA abutment about a month ago. It sticks out ever so slightly from the side of my head – just enough to catch the edge of that nice knit winter scarf… or the neck of the sweater that I tried to yank over my head in a single smooth move. Hm. Do you think anyone will notice when I have an afghan hanging off the side of my head? Maybe I can color coordinate it to go with the spaghetti on my lip…
Gosh, who knew a brain tumor could be so much fun and so very entertaining??
Merry Christmas!
Saturday, December 18, 2010
Under the Category of "I need to get a life..."
So, it's been a month since I got the little rod in my skull and the little snap-like abutment on my head. I am happy to report that healing is moving along right on track. Kind of wish my head wasn't still numb, but I guess I am used to it at this point.
A couple of my baha friends had told me before I had the surgery that once the sight is somewhat heeled, it is lots of fun to brush one's fingers across the top of the abutment and be able to "hear" it. Yep, all true! Now, when I am bored by whatever is going on in my world, I just put my finger over the abutment and let 'er rip! It is freakishly cool. So if you happen to be sitting around with me and see me smiling for no good reason, just take a look and see if I've got a finger pressed to my head.
I also discovered another new noise sensation -- if I snap on the little white plastic "healing cap" it makes a really cool sound as it snaps on the abutment.
Jeez, I really DO need to get a life, don't I?
A couple of my baha friends had told me before I had the surgery that once the sight is somewhat heeled, it is lots of fun to brush one's fingers across the top of the abutment and be able to "hear" it. Yep, all true! Now, when I am bored by whatever is going on in my world, I just put my finger over the abutment and let 'er rip! It is freakishly cool. So if you happen to be sitting around with me and see me smiling for no good reason, just take a look and see if I've got a finger pressed to my head.
I also discovered another new noise sensation -- if I snap on the little white plastic "healing cap" it makes a really cool sound as it snaps on the abutment.
Jeez, I really DO need to get a life, don't I?
Friday, December 3, 2010
The Unveiling
This week marked two weeks since my baha surgery, and time to get the dressing off and stitches out. Went into NYC on Wednesday and the surgeon undressed and un-stitched everything and then proclaimed her work to be excellent. Not being able to see around the side of my head, I had to wait until I got home to be able to get a good look at things for myself. Eek. Did you know that I have what appears to be rivet on the side of my head???? Frankly, I am not sure whether to be excited or totally creeped out.
Actually, it isn't as bad as I feared. The abutment is small, maybe as big around as a pencil eraser and sits almost flush with my head. That is reassuring as I would sure hate to get it caught on my brush... The incision is also quite small and eventually won't show at all. At the moment, the little bit of my head that was shaved for the surgery is starting to grow new hair and it itches like crazy. These are the things no one tells you about...
I am trying to get an appointment scheduled for mid-February to see the audiologist who will install the processor and show me how to use it. Seems like a long ways away, but I am sure it will be here in the blink of an eye.
One more step in the acoustic neuroma journey...
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