Man, I have been slacking with posting here (or anywhere, really) lately. I actually thought about taking a little hiatus while I try to focus on some other aspects of my life, but that just seems too severe. Plus I want to be able to write when I feel like it, and the moment I say “I’m taking a hiatus” I will probably be struck with an uncontrollable urge to write.

Let me just give you a little update on things here. First of all, today I FINALLY called the Cheyenne Mountain Resort to book the extra nights we’ll be staying for this summer’s NFED Family Conference. I called the reservation line and it automatically puts you on hold while you wait in the queue.

I’d like to just mention that the hold music was so fantastic that I wanted to sit there on hold for as long as I could. I’m serious! As I listened to it (and did a robot-like dance in my chair), I wondered if it was the hold music that they talked about on an episode of This American Life, which I used to listen to religiously. After I got off the phone I googled “awesome hold music” and found out that yes, it was the same tune.

Now that I’ve piqued your interest, check it out for yourself here. I’m actually listening to it as I’m writing this post.

Also, if you’ve never listened to This American Life on NPR, you might want to take a gander. An auditory gander.

Speaking of auditory. Yesterday I had a routine visit to my ENT. Good news! My ear is stable. Not that I really expected anything different, but it’s always nice to get confirmation that you don’t have a diseased inner ear. I also had a hearing test. Blah.

I’m not terribly fond of the audiologist my doctor uses. This is the same woman who got the silicone stuck in my ear last year, but even before that I found her annoying. First of all, she speaks really softly, which is a bad quality in a person who is working with hearing impaired people, right?

One of the other things that makes me not take her seriously is that when she does the test where she says a word and I have to repeat it, she doesn’t do a very job of covering her mouth, so I can see her forming the words on the other side of the booth.

Also, it’s the SAME WORDS over and over! They are going to think I had a miraculous regeneration of my hearing because I know it’s:

Ice cream. Toothbrush. Sidewalk. Hot dog. Backpack. Lollipop.

Add a wind sound in my good ear.

Hot dog. Ice cream. Toothbrush. Backpack. Lollipop. Sidewalk

I’ll admit it gets hard when it is just one syllable words. Sometimes I have literally no idea what she said, and I can’t even think of a word to repeat back so I just shake my head in defeat.

At a couple of moments during the test, she turned up the wind sound SO loud in my good ear that I actually had to pull the headphone away from my ear. What the hell. Maybe this is what I don’t like about her the most. She does not seem to notice how sensitive my ears are.

It seems like a paradox that I could be so hard of hearing, yet so sensitive at the same time. I have been thinking about it a lot in the last 24 hours. I am not sure if it’s because I have to struggle to hear sometimes that I am so sensitive, or if I would be this sensitive even if I could hear perfectly. In fact, maybe it’s a blessing that I can’t hear perfectly, because maybe all the loudness in the world would drive me insane.

I really don’t like loud noises. I never have. When I was growing up, my dad had a dirt bike. I don’t think I ever got within 50 feet of it when it was turned on because it was so loud. In fact, when I knew he was going to start it up, I would run into the house and cover my ears. Even now, I practically have a heart attack when a motorcycle drives by me and revs the engine.

Come to think of it, maybe I am just a huge wimp…

Well, that’s enough of an update for now. I need to hit the hay! Goodnight and good luck!

Throwback Thursday – Bonus Edition!

Hi there! So I was going through some of my journals looking for future Throwback Thursday posts (because it’s easier than creating new content) and I came across this one from just two years ago. I hope it gives you a chuckle.

Tuesday, December 18, 2012

Well, today confirmed what I’d always suspected was true: a GYN exam performed by a male doctor is more awkward than one by a female doctor. Perhaps it was the moment when, as I lay with breast exposed, he began rubbing his hands together vigorously like he was about to dive into a good meal. I realize he was merely trying to ensure that he wouldn’t give me a chill with cold hands, but the movement was so awkward that I almost burst out laughing right then and there.

Also, when approaching my vag, he would run the back of his hand down my inner thigh. I guess it was to alert me to his presence, but it was SO WEIRD. I mean it was vaguely stimulating! Maybe that was the idea – if the vag is happy, it won’t mind accepting a speculum? Ew!

The rest of the exam was fine, I suppose. I tried not to feel awkward, but he was younger than I had expected. At least he wasn’t my age, because that would have made it 1,000 times worse.

– – – – –

Editor’s note: I did not return to that doctor. He was a general practitioner and I thought it would be easy to just throw in a GYN exam with my regular physical, instead of going to two different appointments. But no. I later found a male GYN who was not awkward, and I actually like him better than my previous female GYN because he doesn’t ask me when my boyfriend is going to propose or when I plan to have children. (Judgy much?)

Oh, hello!

Happy New Year, and all that jazz.

Here is something I have been pondering lately:

I tend to be (over)sensitive to the way people smell. I really dislike smelling bad breath and gross body odor. I’m not averse to all body odor, I mean, I spent part of my youth in Vermont, among pot-smoking, dreadlocked, and wool-sweater-wearing people.
But I’m getting off track.

What I’ve been contemplating is how I haven’t ever noticed any of my doctors smelling bad. Or smelling much at all, for that matter. I wonder if they have to take some kind of personal hygiene class in med school? Or if it’s just that the type of people who become doctors are also the type of people who take pride in regular bathing and grooming habits.

Just some food for thought…

Deaf As A Post – Part 2

Throughout my late teens and most of my 20’s, I lived in ignorant bliss when it came to my ears.  My “bad” ear was stable enough that it didn’t bother me.  Once in a while I would have nagging thoughts about the cholesteatoma coming back, so I would make an appointment with my ENT to reassure myself. He was affiliated with Yale, so I figured he would know what he was doing.  He said my ears had obviously been through a lot but that things looked fine. All the time I wondered if I could really trust him and if maybe he was just too nice.

Something about reaching 30 made me start thinking more seriously about my health issues. I decided to find another ENT and get a second opinion on the state of my ears.  I did a Google search for “best ENT in CT” and found someone else nearby.

On my first visit, I am brought into the “Micro Room”, which is a stark white room with a reclining exam chair in the center. The windows along the back wall are covered with vertical blinds behind which there’s nothing to look out at except a flat gravel roof and brick walls of the buildings next door. The only pictures on the walls are schematic diagrams of the inner ear and a poster promoting the cessation of tobacco use.  Behind the chair, out of view of the patient, is a cabinet with innumerable drawers housing a plethora of medical equipment. There is a swiveling metal arm similar to the kind you see in a dentist office, except this one has something like binoculars on it instead of a lamp. That is the microscope that they will use to see what’s going on inside my head. 

I sit in the chair and face the tobacco poster.  It’s a slightly abstract drawing of a man’s face with arrows indicating all the areas that tumors can develop if you don’t quit chewing tobacco or smoking cigarettes. I look at the linoleum tile floor and around at the ear diagrams. I wonder how many ear diagrams I’ve seen in my life, and yet, if you sat me down with an unlabeled one and asked me to name all the parts, I’d have to stop after about three words.  As I sit there idly, I can feel my anxiety creeping up. I try to soothe myself with thoughts of what I’ll do later that afternoon.

After a while, the doctor comes in. He is younger than previous ENTs I have visited but I realize that the older I get, the more youthful doctors seem by comparison. We talk about my situation for a few moments before he lays me back and takes a look in my ears with the scope. He explains that the right ear has tympanosclerosis, or calcification of the ear drum. The ear drum is also heavily scarred from childhood ear infections and tubes.

Now for the bad ear. He is surprised at the condition of my left ear and asks me how often I have had the mastoid cavity cleaned out, and when was the last time I had it done. I can’t remember. “About a year ago?” I underestimate. My pulse quickens as he comments on the horrendous state of the cavity and I anticipate that a cleaning session is about to commence.

When I was 9, after my radical mastoidectomy, I added a new medical procedure to my repertoire. The not-entirely-pleasant mastoid cavity clean-out. Or simply put, getting my ear suctioned. I’ll spare you the graphic details of a radical mastoidectomy but visualize, if you will, taking a melon-baller and scooping out the inner ear a couple of times. Removing all or most of the functional parts of the ear and even some of the skull bone in the area. You’re left with a cavity, or a bowl. An empty space. Since the normal function of that area has been destroyed, the ear can no longer clean itself out naturally. So stuff builds up in there. Not copious amounts of stuff, but stuff. Dead skin cells, ear wax, who knows what else.

As a kid, my ENT at CHOP (Children’s Hospital of Philadelphia) would bring me into a darkened room and have me lie on an exam table. His microscope was connected to a camera which displayed the images on a t.v. screen on the wall at the foot of the bed. I always squeezed my eyes closed because I was terrified of seeing my own insides (or anyone else’s, for that matter). As I lay there, he would insert the suction in my ear and I would feel a light tugging. The device would make slurping sounds, like when you’ve reached the bottom of your milkshake but continue to suck at the drops on the bottom of the glass. Sometimes the left side of my tongue tickled as he poked and prodded inside my head. My mom would watch the t.v. screen with interest as the doctor commented on the process. It usually lasted a minute or two and then it was over. If I felt dizzy, I would lie there a little longer until I could function.

My new doctor is surprised that the Yale doctor hadn’t told me I should come in more often for cleanings. My heart sinks a little. I’m frustrated that I haven’t been given better information about my ear (or perhaps I chose not to comprehend what I’d been told). I make a mental note to put forth more effort to ask questions, research and be an advocate for myself.

At first the suction feels good, like scratching at an itch I can’t otherwise reach. It has literally been years since my ear has been suctioned. As he manipulates the tool down further into my ear, it becomes a little uncomfortable. I try to focus on something else, to breathe steadily and relax. But my body is tense: my shoulders stiffened and my hands gripping the arm rests as if I’m expecting to be thrown from the chair at any minute. Breathe… Focus on your breathing, I think to myself deep breaths…

Now the sensations have move beyond uncomfortable. There is painful tugging, as if he is pulling on a scab. “Ow!” I quietly exclaim. Always a courteous and obedient patient, I try not to make a fuss. The tugging, scraping and tickling sensations continue as doctor mutters about how much debris is in there. After several minutes of this, my attempts to remain calm have been forgotten and my focus now is to keep from breaking down in tears.

I’ll admit now that I was feeling very sorry for myself in that moment. It wasn’t fair that a young, healthy person like me would have to be subjected to this medical torture. Not to mention, I didn’t have good health insurance and here he was talking about how I needed to come in for ear cleanings every 3 months. How could I pay for all that? My friends were out spending money on fun things like vacations and houses and… student loans.

Finally, another great tug and the feeling of a chunk of something being ripped out of my ear is more than I can handle. The waterworks turn on. I sniffle quietly as the tears roll back towards my ears. The assistant puts a comforting hand on my arm. “It’s okay honey, just let it out.” Little does she know what she’s suggesting. “Letting it out” would result in a sob-fest that would be hard to stop, so I choke it down and wipe my eyes with the tissues she hands me.

Mercifully, the doctor determines that he has done enough damage for the day. He prescribes ear drops to put in every night and instructs me to return in several weeks time for further cleaning. He tries to cheer me up by saying that we made progress and that if we stay on top of things from now on, it won’t be so bad.

I cry in my car as I drive home from the appointment. I feel defeated. Knocked down. Scared. That night as I put the drops in, I cry some more. I realize that I’d been fooling myself to think that I’d ever be free of the issues that come with EEC. I realize that I am the only one who can choose to improve the situation. I resolve to get serious about my ears and figure out a way to pay for the medical bills that loom ahead of me.

As I write this, over 3 years later, I realize how important that crappy day in the office was. I didn’t know it at the time but it was a turning point for me. Since then, I was able to find a better paying job (one with amazing health insurance!) and I have been dedicated to getting my health issues reigned in. I’ve accepted that EEC is going to be with me for life but I have decided to take as much action as I can and try to stay on top of it. As I prepare for tomorrow’s surgery, I am keeping a positive outlook and remembering to keep it all in perspective.


Deaf as a post – Part 1

Trying to be enthused about starting 4th grade late.

Trying to be enthused about starting 4th grade late.

For about a week now, I’ve been 85% deaf (as opposed to my usual 50%). I seem to have acquired an infection or a swelling or some thing which has caused my good ear to feel clogged and useless. I’ve been walking around feeling like I’ve just jumped into a swimming pool and the world is muffled.  

My nerves are a little frazzled lately, in part due to this ear thing. If you’ve ever gotten water in your ears, or had your ears pop in an airplane or something, you know how annoying it is when they don’t feel (and hear) right. You never think about how often people speak in hushed tones at work (or should I say gossip?) until you can’t hear them. Sitting at my desk and watching a co-worker mouthing the latest gripes and having no idea what she’s saying makes for some awkward moments. Worse yet is not being able to clearly hear my boss giving direction for a project. 

Ok, who am I kidding, this happens even when my good ear IS working.

So you’re probably wondering what the problem is. Well, ear problems go hand in hand with cleft lip and palate, thanks to improper Eustachian tube function. Since infancy I had frequent ear infections. Every time I’d have surgery on my mouth, they would pop some tubes in my ears in an attempt to alleviate the ear issues. The tubes would always work their way out a short time later and the infections would return. Over time, my ear drums became heavily scarred from all the tubes and all the infections and subsequent ear drum ruptures.

When I was 9 years old, I had surgery on my left ear. I had been suffering from a chronic ear infection for years before that. I’m sure there was pain and hearing difficulty during those years but all I remember was the frequent dosing of antibiotics, or “bubble-gum medicine” as we called it, because it was bright pink and candy-flavored. So I was 9 years old and I had this surgery which was supposed to be an outpatient procedure. I think it was an exploratory surgery because the doctor we were going to couldn’t figure out what my problem was. So when they went in, they discovered that my inner ear was full of cholesteatoma, which as I was made to understand at the time, is basically a tumor made of skin. They opened up my ear from behind and removed all the cholesteatoma, along with bone and parts of my inner ear.

I woke up from the surgery with an incredibly sore neck. My head was wrapped in what felt like an enormous, heavy bandage. My parents were really upset and they told me then that the hearing in my left ear was gone. I don’t recall being sad about it. Considering the amount of cholesteatoma and the extent of the infection I had at the time, I probably hadn’t been able to hear well from that ear anyway.

A few days later we returned to the doctor so he could remove the bandage and take a look at my ear. I sat on my mom’s lap as he began unwrapping. As he pulled away the last bit of gauze, a gush of smelly fluid came out from behind my ear. Mom exclaimed concerns about fainting and the doctor exclaimed too – something along the lines of “Oh crap, that’s not good.” The incision had become infected. Back on antibiotics I went, and home I went with a hole in my head. It had to remain open until the infection cleared up.

Part of the infection-healing process was that my dad had to apply antibiotic ointment to the incision every day. My mom couldn’t bring herself to do it (and I don’t blame her). It was a hideous experience. When he would get home from work in the late afternoons, I would lie face down on the bed while he took a Q-tip and gently applied the antibiotics to the back of my ear. I hated every second of it and just thinking about it now makes me queasy.

Ultimately that infection healed and the wound was closed up. I missed the first week of 4th grade and, as you can see in the photo above, once I did return to school I still had the cotton ball and ointment going on for a while. Plus I was exhausted.

Sadly, that was not the end of the ear problems. The following summer I had to spend a week in the hospital for an intravenous antibiotic treatment to clear up further ear infection. By then we’d switched to another ear doctor because my parents were horrified that the previous one had missed the signs of cholesteatoma until it was nearly too late. For several years I had regular visits to the ENT to have my ear “suctioned”, which as you can imagine is not the most fun process. After a while, it was determined that my ear was okay and I could stop using ear drops and eventually I stopped visiting the ENT.

For the most part my ears were okay throughout my teens and 20’s. The occasional ear infection or wax buildup in my “good” ear would sent me to a doctor for treatment. It wasn’t until my 30’s that I finally decided to find a good ear doctor and find out what was going on in both ears.

Stay tuned for Part 2 – my adventures in ENT issues as an adult.

Where it all began – The story of my birth.

It was a dark and stormy night…

No, just kidding.  It was a sweltering midsummer afternoon when my mother’s contractions began.  My father’s cousins had come over to swim in the pool that day and through the window my mother could hear them laughing and splashing as she lay on the bed.  She would have been out there with them, cooling off from the heat, but she hadn’t felt so good and needed to lie down.  When my father came home from work a couple of hours later, he would take her to the hospital where I would make my debut.

My birth was a greatly anticipated event.  Not only was I the first child for my parents, but I was the first grandchild and first great-grandchild for all parties involved.  Everyone was waiting with bated breath.  Because my mother was young and healthy and there were no known health issues in our family, she had not had any ultrasounds or prenatal testing that would have indicated anything was amiss.  They didn’t even know if I’d be a boy or a girl.

Labor and delivery went as expected and I came into the world at 11:44 pm that summer night.  It was immediately obvious that all was not “right” with baby me.  They allowed my mother to hold me for a few minutes before taking me away.  While a cleft lip and palate was not an unheard of birth defect, my “clawed” hands and feet, sparse hair and eyelashes were cause for concern.  The doctors wanted to examine me further to determine if I had missing or deformed internal organs or mental deficiency.

My mother was taken up to her room without me.  My father went home to share the news with Gram and his cousins who were waiting to hear.  My mother called her mother to let her know that I had arrived but that there were some unexpected complications.  No one would tell her anything, so she didn’t know what else could be wrong with me besides the obvious.

It would be a long, lonely night.  At some point not long after she had settled into her room, they brought in another woman who had just given birth.  She had her baby with her, and all night my mother could hear the mother and baby on the other side of the curtain, cooing and bonding with each other.  Meanwhile, she had no idea where I was or what was going on. It wasn’t until early the next morning that I was brought in and she could finally hold me again.

Later that morning a plastic surgeon came in to talk to them about cleft lip and palate. The doctor was old and what he said was blunt.  “Your daughter will never look normal.  The sooner you accept that, the better.”   Despite this harsh diagnosis, he was the one who referred my parents to the cleft team at St. Christopher’s, and the skilled hands of Dr. Hulnick.  It was also sometime that morning that someone came in with pamphlets from the local AboutFace organization, which was a support group for people with various facial deformities.

Within the first week of my life, my parents took me to see the cleft team at St. Christopher’s, which was associated with Temple University.  This would be the first of many times I’d endure a full day of examinations.  The team made my first palatal obturator – which was an acrylic plate that fit across the roof of my mouth and allowed me to drink without aspirating.   (More on all this in a future post!)

Of course I don’t remember any of this.  I had to call my mom and asked her for the details.  Growing up, I’d always known basic facts about my birth, like how I’d been born at 11:44 pm, and that I surprised everybody with my birth defects, but I never really asked my mom how she felt.  How anyone felt.  I mean, was there some level of disappointment that a perfect child was not produced?

She said she remembers feeling fearful and overwhelmed.  She wondered how she would be able to provide everything I needed.  There was a lot of uncertainty about what my diagnosis meant, but there was such joy at my arrival that it outweighed any negativity.  Nana, (my maternal grandmother) was really supportive.  She was a nurse, so she was battle-hardened when it came to medical stuff.  She came up from Maryland and stayed with us for a week after I was born.  My other grandmother, (Gram), lived with us (technically, we lived with HER, but I didn’t realize that until I was much older), so  she was there every day and helped to hold me down while my mom applied my obturator and cleaned the junk out of my nose.

I asked my mom if she ever felt uncomfortable taking me out in public before my lip repair.  She said that she wanted people to see me and that there was nothing to hide.  She told Gram, “let people look if they want to look!”  They took me to the mall, to the grocery store, the bank – everywhere.  People would sometimes ask if I had been in an accident or if I’d gotten hurt.  She thinks it was good for her to talk about it.  Only once does she remember losing her cool.  While waiting in line for a teller at the bank, she noticed a man who would not stop staring at me.  He never said anything, he just stared.  Finally she snapped at him “Would you like to take a picture?”

It was interesting talking to my mom about this.  She began to recall things she had forgotten.  As we talked, I realized that she might not be remembering everything with exact accuracy.  For example, she recalls being told about the NFED soon after I was born.  However, the NFED wasn’t started until 1981.  She probably found out about it through a doctor or counselor at a hospital when I was still quite young.

I have some of the records from my birth.  No pictures, but here is my Discharge report.  I think the use of the term “clawed hands” makes it sound like I was a gryphon or something.  Which is actually kind of cool.

Dr. Hulnick

My first plastic surgeon was Dr. Hulnick at St. Christopher’s Hospital for Children.  I had 5 surgeries with him, the first when I was barely 3 months old and the last when I was 6.  I don’t remember what he looked like, but I do remember him being a big part of my early life.  I was just shy of 9 years old when he died.  My mom wept and wondered out loud what were we going we do?  I had no idea at the time – in fact, I have only recently realized – just what amazing work Dr. Hulnick did.  I am grateful that he was my doctor and did such beautiful work on my lip and palate repairs.

While doing research for this blog, I came across his obituary, which I’ve posted below.  My heart swells to read about what a kind and caring man he was, and I know I was fortunate to have him work on me.

Stuart Hulnick, 50, Plastic Surgeon

By Henry Goldman, Inquirer Staff Writer

June 16, 1989

Stuart J. Hulnick, 50, director and founder of the Burn Center of St. Christopher’s Hospital for Children and chief of its plastic-surgery section, died of leukemia Wednesday at his home in Lafayette Hill.

A pediatric burn-care specialist and plastic surgeon, Dr. Hulnick became nationally known for his writings on reconstructive microsurgery, burn care and treatment of children born with cleft palates.

Among his colleagues in Philadelphia, he developed a reputation as a tireless surgeon who worked long hours because of his commitment to caring for suffering children.

“He could have made a fortune as a cosmetic surgeon, but went ahead and did burns, the most difficult work,” said Myles G. Turtz, chief executive officer of the corporation that owns St. Christopher’s.

Dr. Hulnick’s friends remembered him as a man who enjoyed simple pleasures in life and took great pride in his wife and two children.

Born in Staten Island, N.Y., Dr. Hulnick studied American literature at Princeton University before entering the University of Rochester Medical School. He interrupted his medical residency at Strong Memorial Hospital there to serve in the Air Force from 1965 to 1967. He then returned to Rochester, where he was a senior resident and later the chief surgical resident at Genesee Hospital.

He came to Temple University Health Sciences Center in 1970 and spent two years there as a surgical resident before joining the medical staff at St. Christopher’s. In 1978, he became chief of plastic surgery and he founded the burn center – the only such children’s unit between Washington and Boston.

Yesterday, the hospital’s executive director, Calvin Bland, said the burn center would be named after Dr. Hulnick.

For more than a decade he served on St. Christopher’s board of managers and on the board of trustees of the Burn Foundation of the Delaware Valley. He remained in those positions until his death.

A member of the American Society of Plastic and Reconstructive Surgeons, Dr. Hulnick taught plastic surgery at Temple University Health Sciences Center and was on the medical staff of Chestnut Hill Hospital.

“I’ve never seen anyone love kids, and love kids who have had the horror and devastation of burns, as Stu Hulnick did,” said William H. Weintraub, who was recruited by Dr. Hulnick more than 10 years ago as the hospital’s chief of surgery.

“He had an unbelievable amount of commitment to children who had suffered the disfigurement of burns. I’m not sure he’s replaceable.”

He was “a straight shooter, a gifted surgeon and a brilliant guy,” said Turtz, who heads the nonprofit corporation that owns St. Christopher’s and two other hospitals.

Burn treatment for children, Turtz said, “is probably the most difficult job you can do, requiring extraordinary care and technique and constant attention.”

“He was a tremendous amount of fun, and he also had the capacity to be very silly,” said Diane Williams, who is director of nursing at Valley Forge Medical Center and a longtime friend of the Hulnick family.

Noting that a memorial service has been scheduled for a dining room at St. Christopher’s, Williams said, “He loved food and he disliked pretension, so it’s appropriate that a memorial service be held for him in the hospital cafeteria. He would love that.”

In addition to his work with burn victims, Dr. Hulnick ran a unit for children who had been born with cleft lips and palates. The clinic was staffed with oral surgeons and speech therapists.

Dr. Hulnick’s third major involvement was as a plastic surgeon for children who were trauma victims. St. Christopher’s has the largest trauma unit for children in the region.

“The kids would start out disfigured and end up beautiful by the time he was finished,” said Weintraub.

Dr. Hulnick excelled in his hobbies as well – needlepoint, gardening, cooking, making furniture by hand, and listening to classical music and opera.

Survivors include his wife, Virginia Cole Hulnick; two children, Lauren and Adam; a brother, and his mother, Martha.

Friends and family may attend a memorial service at 2 p.m. Wednesday in the cafeteria of St. Christopher Hospital’s Morris Pavilion, 2600 N. Lawrence St. Interment will be private.