Category Archives: Living with EEC

What Would You Give for your Kid Fears?


I’m sitting here listening to an Indigo Girls playlist on YouTube. It’s been a while since I listened to them, and oh man, how I’ve missed these beautiful melodies. They’re like the female version of Simon and Garfunkel. They make me want to learn to play the guitar. Their music reminds me of my carefree younger days in Vermont, when I was so naive I wasn’t sure if the Indigo Girls were lesbians, and if they were, did liking their music make me one too?

There’s more than one answer to these questions, pointing me in a crooked line.

It’s been 8 days since my last post, which stinks. That weekend I was barely containing my rage over how uncomfortable my mouth was. First thing on Monday I got in to see the dentist and had him trim off a bunch of the material. It helped, though my mouth was so sore at that point it was hard to tell if it was all OK or if more needed to be trimmed.

Immediately after that, I had to drive down to Mystic for a meeting. Of course there was a big ol’ snowstorm brewing at the time, so it took twice as long to get there as it should have. As soon as I got there, it was work, work work. I considered doing blog posts in the evenings like I have in the past, but Mystic in the middle of winter isn’t terribly exciting. I only got to leave the hotel in the evenings for dinner anyway. It was really pretty under a blanket of snow, I will admit.

The saddest sight my eyes can see is that big ball of orange sinking slyly down the trees.

It seemed that there was still material rubbing the sore spot on my gum/lip, because my mouth was still in so much pain every time I tried to eat. It probably sounds stupid that I was so insistent on keeping the bridge in, when I could have just taken it out and most likely no one would have noticed anyway. But no. I refused. At one point after lunch one day I did go in the bathroom and remove it, but no sooner had I done that when I was asked to talk extensively about something. So I had to excuse myself for a moment under the premise that I was getting a mint out of my bag while I discreetly popped the bridge back in. I didn’t want to feel like I was lisping and slobbering all over the place.

I’ll tell you, having constant mouth pain really doesn’t make for a social Heather. I was so irritated the whole time I had to keep telling myself not to punch anyone in the face. I’m usually pretty quiet anyway, but this time I was avoiding talking as much as I could because the less I moved my mouth, the better. I was so relieved to get in my car after the meeting ended. The first thing I did was pop out the bridge. I resisted the urge to throw it out the window. 

When I got home, I found some emery boards and got to work sanding down the piece that was irritating me. Believe it or not, it actually worked! I probably only sanded off a 1/16th of an inch, but it was all it needed. These last few days the sore has been healing and I’m now able to wear the bridge all day without getting violent.

If we ever leave a legacy, it’s that we loved each other well.

In other news, tonight I was supposed to give a speech at Toastmasters. I had planned to talk about the history of cleft lip and palate treatment, as this was something I’d been wanting to look into for a while anyway. The meeting ended up getting cancelled thanks to the weather (snow and 15 degrees… what’s the problem?). When I got home I recorded myself giving the speech but I had issues getting it uploaded so I’ll have to try again another time. For now I am ready for night-nights.

Temporary Discomfort


I got my temporary lower bridge last week. It is a strange feeling to have something foreign in my mouth. Despite having had all kinds of weird apparatuses (I really feel like the plural of apparatus should be apparati, but apparently it’s not) in my younger days, I can’t say I welcomed the introduction of this piece.

These past few days have been filled with anxiety. First, I wondered why I thought it was a good idea to even get a temporary, when I could have just kept wearing my slightly broken lower bridge until we decided what to do. Because we still haven’t decided whether to fix the existing one or make a whole new one.

If you’ve ever had braces, or any kind of dental device, you know it takes some getting used to. This one is pretty snug, but there are a few points that seem to be pressing against my gums unpleasantly. One edge is rubbing at the crease where my lip meets my gum, causing a sore. Of course it’s the weekend so I can’t just go in and have him sand down that piece. When I try to eat with it, there’s this unpleasant squishing feeling as it mushes against my gums with every bite.

It’s bringing back memories of my younger days when I had to wear these kinds of things all the time. The mild taste of acrylic, the dull ache of pressure when I first put it in. The nagging sores where the edges rub. I must have much less patience now, because it’s all I can do to keep it in my mouth the whole day.

I know that if I can just bear through these first few days I will get used to it, as I have gotten used to all the other dental situations in my life. And I try to remember poor George Washington with his uncomfortable dentures, and realize that I am lucky to live in this day and age where my dentist isn’t cobbling together some mix of animal and human teeth for me to wear.

large_dentures-transparent
One of GW’s sets of dentures

Another point of anxiety is wondering if I can get my insurance to cover any of this. My dental insurance maxes out at $1500. Which is nice if all you need is one crown, right?

In other news, I started listening to this audiobook:

 

stiff_the_curious_lives_of_human_cadavers_cover

Ever since I was a very wee lass, I have been terrified of internal organs. It’s a running joke in my family that I can’t even look at an animal heart, much less a human heart, or any other part for that matter. I have had nightmares about being in an operating room and needing to perform surgery on someone or being forced to participate in an autopsy (as the person wielding the knife, not the person on the table).

My fear has lessened as I’ve gotten older, probably thanks to gratuitous violence and gore on TV and in movies. But I am still pretty creeped out at the thought of body parts or of dead bodies. I suppose a great deal of this fear has to do with simply confronting my own mortality. I also suspect there’s a part of it that hearkens back to my earliest days in the hospital and in surgery and that feeling of a loss of control and surrender to the doctors and hospital staff.

So anyway, I’d had my eye on this book for a while and finally got to it. I’m only about three chapters in but so far it is morbidly fascinating and I have not yet had to stop in horror. Perhaps this will help me overcome my fears a little more.

 

Dental Update…


Last time I wrote I was excited because I went through my dentist appointment without having my bridgework removed. My doctor has since acquired the necessary tools to remove my lower bridge, so that was how I spent this Wednesday morning.

I made a quick video about it when I got home tonight. You can see I’m trying really hard to speak clearly. It takes me back to all the times I had surgery or orthodontic work and had to re-learn how to use my mouth. It really sounds like I say “meow” at 2:34.

Tomorrow I go back for a temporary bridge, so perhaps I’ll post an update of myself struggling to speak again tomorrow night!

A Life in the Dentist’s Chair


On a regular day, the history of my mouth isn’t something I even think about, but the moment I walk into a dental office, that familiar smell nearly knocks me to my knees with dread. Memories of countless times before, sitting anxiously in the waiting room, flipping through magazines, wishing I was a model with naturally perfect teeth, wishing I was anywhere but there.

To say I’ve had a lot of dental work is a bit of an understatement. I’ve already written about some of it, and the anxiety I developed over the years in my post Oral Fixations. You would think that having been in the dental chair literally hundreds of times in my life would mean that I would approach the chair like an old friend. Not so. Not so at all.

Tomorrow I am having a consultation with my new dentist to talk about updating my bridgework and fixing my bite alignment. I really do want to do this. My jaw clicks when I chew and it’s uncomfortable. My bridgework is nearing 20 years old, and could use some refreshing. I want to be able to chew my food comfortably again, and, if possible, do it more gracefully.

In preparation for tomorrow’s visit, I was looking through some of my old dental records. I came across some x-rays and other weird things so I thought it would be fun to share. It reminds me of how far I’ve come, though looking at some of my earlier x-rays makes me kind of sad. I wonder if I was going through all this now, if they could have done more to save my natural teeth, and perhaps eliminated the need for 10 implants. I’m told that they would never do so many implants so close together now. But I’m also told that my doctors did a great job on my mouth, so that is good to hear, and I suppose it means it was all worth it.

Walk with me now, through some of my mouth’s greatest adventures.

img_5833
My first dental appliance – at least the first that I still have in my possession. This was the obturator that Mom and Gram had to wrestle and hold me down every morning to put in. It fit across the roof of my mouth and closed the hole in my palate so that I could drink my baby formula. (I have no conscious memory of this happening.)

 

img_5785
A snippet of the new patient form my mom filled out when I started with Dr. Prusak. Thank goodness for him. He was so kind and gentle and he really knew how to handle a scared little girl like me.
img_5830
Pano of my 5-year old mouth. Look at that beautiful bilateral cleft! My eye sockets look misaligned because I moved my head during the x-ray. I actually had a lot of teeth for someone with ectodermal dysplasia. Notice the creepy orbs with adult teeth buds in them in my lower jaw. I was probably scared out of my mind getting this x-ray, but I have no memory of it now.
img_5838
Dr. Bond created this to push my front teeth forward and my canines outward. It worked. It was attached to my upper arch with brackets on my back molars. I couldn’t take it out. I spent a lot of time working food out of it with my tongue after meals.
img_5755
Heres that contraption at work. My two front teeth started out twisted and pointing inward. Dr. Bond devised the metal sculpture to push those teeth forward. Every time I saw him he would adjust the wires just a tad until my teeth were finally in position, which it looks like they are here. This was before the bone graft to close my clefts, obviously.
img_5810
Another pano at age 12. Post bone graft. I was already sporting a mouthful of metal. You can see that some of my molars were still baby teeth with no adult teeth behind them.

Fast forward about 20 years – post LeForte Osteotomy and post implants…

img_5743
This is about how my mouth looks now, give or take a root canal and a crown or two. Talk about a metal mouth. I still have 9 real teeth, though they have been enhanced by crowns and root canals…
img_5737
This is a plaster model of my recent mouth situation. (They look like horse teeth.) The bottom ten teeth are part of a bridge that is screwed in to my jaw on 6 implants, and the top six teeth are a bridge that is cemented onto the top 4 implants. Only my molars in the very back are what remain of my natural teeth.

I expect I will be getting another pano x-ray tomorrow. If I can get a copy of it, I will definitely post it. Of course I will post about whatever ends up happening with my future dental work too.

You may be wondering, after seeing my current model, what I could possible still need to have done. Well, the top bridge has a terrible habit of coming lose and falling off. And you can’t tell from the model but there is a slight gap between the top of my bridge and my gums, which means whenever I eat, food squeezes through and nestles in the cracks between my teeth. Since they are fake, I can’t feel it, though I have learned to constantly be checking my teeth for bits of food, it’s really not ideal, and makes for some awkward social moments.

Also, as I mentioned – my jaw alignment has somehow fallen out of whack. And I’ve broken two teeth off the bottom bridge… because it takes three licks to get to the center of a tootsie roll pop… I can’t resist biting things I shouldn’t! 🙂

Stay tuned for whatever’s next in my dental adventure… xx

Home Again


It always feels good to come home. Mom and I bade farewell to Colorado yesterday. We left the resort at 6:30 in the morning and drove to the Denver airport. The sun was in my eyes the whole way and I was irritable but I managed to get us there in one piece. 

We were able to board early enough to get a window seat this time (well, I got the window). What kind of a jerk makes their mother sit in the middle seat? Me.

The Denver Airport from the runway.
  
Rocky Mountain High
  
A midwestern state, don’t ask which one.
  

We took off into a cloudless sky. I was able to take a lot of cool pictures and enjoy the scenery for a long time. The flight passed without incident. Once again, they warned us that there would be turbulence but there was none. When we got to Hartford, Dave was waiting for us. He looked especially handsome. 

Mom and I parted ways, but I will get to see her again by the end of the week since we are camping together. After we got home; Dave, Dad and I went to dinner at our local favorite, Señor Panchos. I regaled them with tales of exploring Colorado and of my friends from the NFED. Both of them were tired from refinishing floors earlier in the day so they probably wished I would just be quiet. 

Today was back to the grind. I was thrilled to learn that my co-worker who had given her two weeks’ notice the week before I went to Colorado had decided she wouldn’t leave after all. I had been trying not to think of it during my vacation but was rather stressed at the idea of having to take on more work or train someone new. So that was a relief. 

It was a bit hard to concentrate at work today, because my head was full of mountains and clouds and thoughts of my friends and all the conversations we had last week. Of course I am glad to be home with my man and my feline children, but a part of me is sad that I won’t see most of those people for another year or more. 

I’m thinking I might have to take at least one road trip to visit those who are within a few hours drive. But for now I will enjoy being home. Perhaps my next project will be to redo my gardens.  

My gardens are out of control.
 

 

Colorado Trip, Day 8 (!!)- NFED Conference, Day 3: The Finale


Today started off with a photo shoot. Everyone from the conference was instructed to stand on the bridge that connects two buildings. We were all wearing our family conference t-shirts, with the exception of a rebellious few. Keep an eye on the NFED Facebook page for those pictures.

After breakfast, Terri and I wo-manned the promo items table. We also got called in to do some quick interviews on video. Yeah baby! (Though I wish I’d done something more attractive with my hair.) I talked about how blogging about EEC has given me more confidence and self-acceptance. 

Promotional table selfie
 

After lunch we said goodbye to Suzanne and Will and some other families who were leaving. Boo.  

 

Bye bye Bracee!
 
Terri and I went to Lindsay’s Skin and Hair session and learned a bit about how to apply makeup and which skin care products would work best for us. Then we had a regional meeting, where we discussed the things we could do to improve communications in our local areas. Then suddenly it was time for the children to sing a song and the conference was officially concluded. 
Wedding crashers.
 

This evening the remaining EEC peeps went to dinner at a local Indian restaurant. We enjoyed the food and were soon uncomfortably full. We went back and hung out on the patio again until it was time for bed. Mom and I have plans to leave at 6 tomorrow to return our rental car and catch our flight home.  

Goodnight, Colorado!
 

I have a lot of deeper thoughts about the conference that I do intend to share on the blog, but I don’t feel quite prepared at the moment. It’s hard sometimes to find the words to express the feeling of being with people who share something so rare as our condition. We are fortunate to have found each other through the NFED, and I love being able to get together once a year and just spend time together. 

I loved being in Colorado. What a gorgeous location. I joked last night that I kept taking pictures of the same mountain that’s behind the resort, but as any nature-lover will agree, the time of day and the angle of the sun and the level of cloudiness all affect the way the landscape looks. I just love it. 

The only disadvantage of the conference being in this location (the resort) is that it felt like we were all spread around. I feel like I missed the chance to run into people and strike up conversation. I did get to meet a few new people, but it didn’t seem like as much as previous years. 

While I am sad to say goodbye to my NFED friends, I am looking forward to returning home to my handsome David and my two fuzzball children. I just remembered that we have a sales meeting during the upcoming work week. Oh work, I have barely considered you once this whole week. 

Next weekend is our Grand Isle camping trip. I will NOT be blogging nightly about that, as I intend to be fully unplugged. I will say that this nightly blogging experience has been interesting and may have helped me become a little less anal about creating perfect blog posts. 

Those of you reading this who were at the conference, travel safe! If I did not talk to you, I apologize. It’s probably because I just did not see you (or hear you). I hope to see you all (ya’ll) next time!

Peace. 

Namaste. 

Blessings. 

Etc. 

 Colorado Trip, Day 7 – NFED Conference, Day 2


I’m running out of steam on this one blog post a day business! I didn’t take many pictures today. 

 

Suzanne sent me this photo from a hike she took this morning.
 
This morning we had a motivational speaker who was interesting. He actually has a child with a rare disease too (though not ectodermal dysplasia). He had some people get up and share their experiences which was interesting. 

My ‘Adult Life 101’ session went well. I got there early and had everything set up all nice. The group was not as large as I had hoped, but we were still able to have a decent little discussion. We really could have used more time though. 

After that it was off to a lunch meeting to discuss the NFED blog. We brainstormed some ideas for the next couple of months. Once again time ran out. It seems like time is flying here!

The afternoon was the syndrome specific session, where we get to meet with other affected people and doctors to discuss various topics. 

Tonight was the talent show, which was a dinner show this year. For some reason our servers were really angry and kept slamming our plates down. I guess they didn’t like the entertainment. 

We then hung out on the patio for many hours. In fact, right now I’m actually writing this from one of the patio areas while my fellow EEC gang talk about how we can better serve older people with EEC. I’m listening!

The view from the patio… many hours ago.
 
In other news, back east, my friends the Claire family spent the day in Boston having little Ronan’s first cleft lip and palate evaluation. They will have to make many trips down in the coming years. It will be a hard row to hoe, but they are an amazing family and will power through. Dennis keeps using a hashtag which I will have to steal- #eecstrong

Definitely gonna make up some T-shirts. 

In conclusion. Here’s a selfie of the group I’m with right now. 

Tomorrow is the last day! Suzanne and Will will be leaving. So sad!  

Colorado Trip, Day 6 – NFED Conference, Day 1


Once again, I woke up bright and early. I guess I really am an east coast girl. Or perhaps I would just be a morning person if I lived here.

Today was the official start of the NFED conference, even though I felt like it started on Tuesday evening when a bunch of us were together for the dinner.

Registration didn’t begin until 10, so we had a leisurely breakfast and goofed around a bit in the morning. The majority of the following images were blatantly stolen from Terri or Suzanne or one of their husbands. I’ve got this beautiful iPhone 6+ that I keep forgetting to use.

Some of the EEC Chicks
Recreating our pose from last year, minus one.

The liaison group, of which I am a proud member, did an intro session at the beginning of the conference. We sung a slightly modified version of “Ain’t no Mountain high enough.” Thanks to Will for capturing this on video for all time. I can’t get it to post on here, so maybe later. We then introduced ourselves and did a little icebreaker activity. Major props to Kristin Kelso for organizing this.

After this, a group of us went out to Garbanzo for lunch. It was delicious and fun to be out and about with the gang. We then ran back to the resort to catch the Family Panel Discussion, which was really good.

I then had to rush out because I signed up to do a facial recognition study, which consisted of being photographed with a 3D imaging camera. This is what it looked like:

The camera(s) for the facial recognition study.

There was a full-color photo, and then this cool topographic view, which I liked better because it makes me look like a Roman goddess. Sort of.

I make a pretty cool looking sculpture.

After dinner, which was a surprisingly delicious veggie wellington, (as opposed to a steak wellington), it was time for the beach party!

We all traipsed down about 1,000′ in elevation to the lake, where children swam and people of all ages kayaked and rode stand up paddle boards. I got to chat with my Ally girl for a bit (photo to come, once I steal it from her mother).

Mountainous beach party.

I also made the rounds and chatted with some other people, but for the most part sat with my usual crew and drank wine. Not too much, of course.

Mom and Marc showing off their flash-endurance skills.

I can’t even with this flash.
EEC chicks and… dudes.

We then returned and hung out chatting with the videographers who are here making some documentary about some of the people at the conference. I’m not one of them, but I guess this blog is my own personal documentary.

I just realized how late it is… I must get to sleep! Tomorrow is a motivational speaker, which I am looking forward to hearing (so I can learn from him and become a motivational speaker myself someday.  Then, I am leading the young adult session.

Sleep!

Colorado Trip, Day 5 – Biopsy and Stuff


One of the reasons we came out to Colorado a bit early was because I volunteered to participate in a research study for EEC and AEC. 

It was really a minor sacrifice- I would let them take a small piece of my skin and they would grow it in a lab and study it.  The goal would be to learn more about the syndromes and potentially find a treatment for some of the skin issues people with AEC and EEC face. 

Waves of nausea.
 

Of course it wasn’t a big deal but I wasn’t exactly thrilled to have to visit a medical facility while on vacation. 

There is something about the cold, sterile medical environment that triggers a cold, hard fear in my psyche. Even though I knew it was just a quick biopsy, it’s still just not a fun place to be. 

Fortunately the whole process was pretty quick and I was able to get on and enjoy the day. Plus, it was pretty fun to hang out with my EEC pals in the waiting room and compare wounds afterward. 

After a very warm walk back to the hotel, Mom and I were off to the science museum. Woo hoo! We saw such delights as the Owl butterfly and display after display of gorgeous minerals and gemstones mined right here in Colorado. I didn’t take many pictures (I’m not even sure if you’re allowed to take pictures), but here are a few highlights. 

The owl butterfly. It would also make a great mask for your next costume party.
  
I’ve got this gorgeous hunk of fire opal. Let me carve it into a snail.
  
Worst Nightmare
  
Denver, as seen from the science museum
 

We also saw a show in the planetarium, which was fun. As we were leaving, we caught a glimpse of Dog the Bounty Hunter walking into the museum. Weird!

This evening we got down to the resort where we will be staying for the rest of the week. Some of us went out for a delicious pizza dinner.  

EEC Peeps

Tonight we tried to hang out a bit at the resort, but after various issues with room arrangements and the general tiredness of one and all, it was decided we would return to our rooms and slumber. 

Tomorrow the NFED conference begins!