Category Archives: My normal life

Fun Times with Nasal Irrigation


Mmm, now there’s an appetizing title if I ever saw one!

Don’t worry, I’ll try not to get too graphic with the details. I just wanted to share the joy of the neti pot as I alluded to in my last post.

I bought my neti pot in the spring of 2008. I was finishing up my last semester at UConn, and thanks to springtime in New England, I was stuffy, sneezy and generally in a sad sinus state. A friend mentioned that she used a neti pot. She explained how you’d fill it with saline solution and rinse your nose with it.

Ew, I thought. That does not sound pleasant. But being stuffed up and simultaneously runny wasn’t exactly the best feeling either so I decided to give it a shot. I went to the CVS on the corner and searched. On the bottom shelf in the ‘sinus’ aisle I found a box containing a plastic neti pot and little packets of salts.

This is the modern version of the one I have. This one is prettier.

Returning to the condo that I shared with two (sometimes three) friends, I locked myself in the bathroom to commence the nasal irrigation procedure. I mixed the salts with warm tap water** and stirred it with the little plastic spoon, right in the neti pot.

**Seeing as we were right up against a farm and we had well water, it’s pretty much a miracle that I was not immediately stricken with brain-eating amoebas. I don’t use tap water anymore, but I’ll get to that later. Let me get back to the story!

I tilted my head to the side, as indicated in the instructions, and began pouring the solution in one nostril. My nose was so stuffy that the water had nowhere to go but down my throat. There was a lot of gagging and sputtering, but after a few tries I was able to get the water to flow through one nostril and out the other.

There was a mild sense of being violated the first couple of times using the neti pot. It was also a bit of a challenge to get the salt content just right and the water temperature right. But after using the neti pot for so many years, I consider myself a pro. So here is my method.

1. Use clean water

Either boil tap water (and let it cool before using, obviously), or buy distilled water. I usually get by with about 1 gallon a week, because I don’t use it every day.

You shouldn’t use raw tap water because it can contain bacteria that can cause infections. (Your stomach is better equipped at handling that bacteria than your nose is.)

2. Warm up the water

I keep my distilled water in a cabinet, so it is at room temperature. I use a 24 oz Mason jar to warm it up. I fill it to just below the mouth (so it’s probably close to 30 oz of water) and put it in the microwave for about a minute. If the water is really cold to start with you might need to go a little bit longer, but be careful not to get it too hot. In the summer, I don’t need to warm it up much, if at all.

3. Add salt

I use one level teaspoon of plain, fine sea salt for my saline solution. I’ve seen recipes that call for baking soda as well but I’m lazy. I just dump that tablespoon into the warm water and mix it up real good.

4. Prepare the sink area

I take the Mason jar of water, the neti pot, a box of tissues and a towel to the sink. The less experienced you are, the more towel you’re going to need. Close the bathroom door. No one wants to see you do this.

5. Do it

Pour some of the water from the mason jar into the neti pot. I’m able to get about 4 neti pots of water out of it.

Lean over the sink like you’re going to spit out your toothpaste. Tilt your head so your chin is in line with your shoulder. Put the tip of the neti pot against your nostril and angle it so the water pours into your nose. This takes some adjusting to get the right angle. For me, it can also depend on how stuffy my nose is.

Don’t get frustrated if it doesn’t work or doesn’t feel right at first. Keep trying and it will get better.

After you’ve done one side, gently blow your nose. Don’t hold one side closed or try to force anything out. Just kind of a heavy breath out through your nose is good.

Repeat on the other side.

6. The Aftermath

Blow gently to get excess water out. It may continue to leak out for a few minutes after. Or maybe that’s just me.

Wipe up the wet counter top with the towel.

Rinse the neti pot and the jar and let air dry.

Why do it?

Ok, maybe you read all this and you still don’t see the appeal. Maybe you’re one of those lucky people who does not have any problems with your nose, and in that case, you probably don’t need to do this. Why are you even bothering to read this?

Do you remember going swimming as a kid, either in a pool or in the ocean, and having water forced up your nose when you did a sweet cannonball, or maybe when a wave hit you in the face? Yeah, it might have hurt for a moment, but do you remember how it felt afterwards? Your nose was clear and every breath was delicious.

The neti pot gives you that kind of relief without the pain of cold water being forced up your face. It’s like a controlled nasal flush.

Have you tried the neti pot? What did you think? Are my instructions helpful?

Allergies Be Gone!


One of my many attractive qualities is that I suffer from allergic rhinitis, which is more commonly referred to as just “allergies”. Itchy, watery eyes and an itchy, runny nose are pretty much guaranteed if I am not careful.

I wasn’t always this way. At least I don’t think so.

Say hello to my little friend.
Somewhere in my early 20’s, I started to notice that I sneezed an awful lot, even when I wasn’t sick. And my nose was runny almost all the time. These symptoms got worse in the springtime, when my sinuses would get stuffy and my eyes would be more red-rimmed than usual.

Back then I had allergy testing to find out what I was allergic to. Turns out it was a lot of things. Birch tree pollen, animal dander and dust, to name a few. At that time, there was an option to get allergy shots, but you had to go to the doctor every week to get the shot.

Um, no thanks.

Instead, I opted to try a prescription nasal spray, and over-the-counter allergy medicines. I tried a lot of things over the years, including herbal remedies (tablets of tree pollen, anyone?) and getting quite intimate with the neti pot before finally settled on Claritin.

Side note – the neti pot. That thing deserves a post of it’s own. Maybe I’ll even do a video! Just kidding – that’d be gross.

This is a ceramic neti pot. Mine is plastic. Otherwise I would have broken it by now.
Anyway, the Claritin worked pretty well, although if I were to pet a cat and then touch my eyes or nose, I would immediately be stricken with a relentless itch and redness for hours afterward.

A couple of years ago my allergies seemed to get even worse. The sinus congestion got so bad that it affected my hearing, if you can believe that. On the advice of my ENT, I switched to Claritin D (D = decongestant) and after a few days, my head began to clear out and I could hear once again.

So anyway, what this long drawn-out backstory is getting to is that I finally got so irritated with the allergies wreaking havoc in my daily life that I decided to do something about it. I had heard about something called Sublingual Immunotherapy, or SLIT and I wanted to give it a try.

SLIT is an alternative to getting allergy shots. As the name suggests, it involves putting drops under your tongue. You can do this at home, so it eliminates the weekly visits to the doctor for shots. Less doctor visits and no shots? Count me in.

It is not necessarily the cheaper option. At this time, it’s not FDA approved, so it’s not covered by health insurance, whereas allergy shots are. Fortunately, I have an FSA (Flexible Spending Account) through work, so I can put aside money, tax-free, and use it to pay for stuff like this. Each batch costs about $240 and lasts for about 3 months. The process can take up to five years to complete. Still, if it works, it will be worth the price.

So how does one go about getting on this regimen, you ask?

First, I had to get another allergy test, because my previous one was a decade ago. This is important, since the whole point of the immunotherapy is to stimulate your immune system and build a tolerance to the antigens that cause your allergies.

Second, I got a lecture from the allergy nurse about things I should do around my house and in my lifestyle to manage my allergies. Some of this stuff I already knew, like, take a shower and wash your hair before bed if you’ve been in dusty or heavily pollinated situations (i.e. springtime…).

One of the suggestions we acted on right away was to make the bedroom a “clean zone”. We bought a HEPA filter. We also got mattress, box spring, and pillow covers. Since I am allergic to dust, this was key. It was also recommended that we shut the cats out of the bedroom since I am allergic to them too. (Honestly.) However, we do let Autumn sleep with us at night, because otherwise she would sit outside the door and howl, which will drive a person insane in about 10 seconds flat. But during the day she is not allowed to lounge and bathe on the bed like she could in the good old days. We also wash the bedding in super hot water to kill any dust mites that may have wandered into the room uninvited.

So anyway. After I had the allergy test (which was a skin injection test), I had to go back to the doctor to get the results. As he unfurled the scroll upon which all of my allergies were listed, he agreed that it would be wise for me to begin SLIT treatment.

SLIT
Bottles from my escalation phase. They’re kind of pretty, aren’t they?
I had to wait a couple of days for the drops to be ready, because they make a special cocktail for each patient. The first batch was called the Escalation Phase. These were diluted versions of the prescription. Each bottle was marked with a colored dot to show the order in which the bottles should be used. By starting out with a little and slowly working up to the full-strength dose, the body would have time to get adjusted to the treatment.

Each bottle would be used for 3 weeks. The first week was just one drop under the tongue. Week two was two drops, and week three was… you guessed it. Then it was on to the next bottle. They gave me a chart to use to keep track of what day I was on and how many drops I should take. I was to make a note if anything weird happened during this time. They also gave me a prescription for an Epi-Pen, to use in the event I had a major reaction. I still carry the Epi-Pen around with me just in case but I have not had to use it.

The only side effects I noticed were on bottle #3. The skin on my neck started flaking and peeling off like I had a sunburn. But this was also the week after I had my hair dyed, so I wasn’t sure whether it was the drops, or a reaction to whatever was in my hair.

Later that same week, I woke up with one eye swollen shut and super puffy. It looked like I’d been punched in the eye! It so happened that this was a week I’d been staying at a hotel for a work event, so again, I wasn’t sure if it was the drops, or the fact that I was sleeping on a hotel mattress with feather pillows near my face. Or that I was having a stress reaction related to my crazy work schedule. The possibilities were endless. (Ok, not really.)

Less than a month after that, I had completed the escalation phase and it was on to the maintenance drops. My first batch of maintenance drops, it turns out, I was overdosing a bit. In my early morning haste, I forgot to look in the mirror and count the drops that were emerging from the little spigot on the bottle like they had instructed me.

Instead, I was just doing three hearty pumps of the liquid into my mouth. By the 7th week, my little bottle was looking pretty low and I was somehow supposed to squeeze another 5 weeks out of it. When I called to reorder, I was reprimanded and told to take it down a notch.

Now I am well into my second maintenance bottle. I can’t say I’ve noticed any miraculous improvement in my allergies, but as spring approaches I should be able to see some difference. I am still using a nasal spray to keep my sinuses cleared (and my ears open). I have tried skipping it for a few days, only to find my head slowly filing up with fog again. I’m keeping my hopes up that eventually I will be able to stop using the sinus spray and not be so easily brought down by a dust bunny or a cat hair or the grains of pollen floating on the wind.

A Brief Recap of Recent Life


Hey ya’ll! My apologies for the serious lack of posts lately. As often happens, life seems to rise up and consume my time like a ravenous beast. I haven’t even taken time to do my morning Zentangles this week, which is an outrage. Here are some of the things I’ve been up to:

Last Saturday I noticed my upper bridge was a little wobbly. Ugh! I think I’ve mentioned before that it is cemented on to four implant posts. I guess that was cutting-edge technology in 1997, but it doesn’t seem to be the best long-term way to give a person a solid grille.

So I noticed it was wobbly, and being the neurotic person I am, I immediately began wiggling it to see how loose it was. Like a kid with a loose tooth, I couldn’t leave it alone. So of course I wiggled it until it came off. I had denture paste in the medicine cabinet, which will hold my bridge in enough to get by for a few days. So I used that, but then I was annoyed by the gross denture paste slime in my mouth, and the fear that anytime I talked or ate, the teeth would fall out again.

Fortunately I was able to get in to my dentist on Monday to have it cemented back in. Still that was an adventure in itself because while I was there, he decided to try and fix my bite alignment, which has been off lately. So he just randomly started grinding down one of the crowns in the back of my mouth. One of the crowns that I paid over $1000 for less than two years ago.

You may wonder why I would let him do that. I thought it was just one point of the tooth that was high and causing my bite to be out of whack, so I thought it would be a quick little adjustment. By now you’d think I would have realized that nothing with my mouth is ever quick. It ended up being a half-hour process of grinding down random bits here and there, lots of rinsing and spitting, and biting on carbon paper (or whatever that stuff is) and repeating the process to get my bite aligned. Even now it’s not really perfect, but I think he had to stop before grinding my molars to stumps. Ugh! I hate my life!

Just kidding, I don’t really hate my life, but I hate moments like that. I was lying there wondering why people are turned on by things like 50 Shades of Grey and BDSM, because I feel like my dental experiences involve dominance, bondage and masochism, and let me tell you, it does NOT turn me on. It just makes me want to punch someone.

Moving on. In exciting news, I finally bought a new car this week. I’ve been talking about it for at least five years, but there was always some obstacle that prevented me from doing it. Namely, being up to my ears in student loan debt. But in the last couple of years I’ve been saving money like a squirrel hoarding acorns and I finally had a nice amount in my savings account so I feel comfortable having a car payment in my life again. My credit score was through the roof, so I was able to get a ridiculously low interest rate, which also made me a happy camper.

In equally exciting news, tomorrow is the NFED Regional Family Conference in White Plains, NY. It sounds like there are a lot of people signed up to go, and the weather forecast is clear, so it should be a great turnout. I’ll be zoom-zooming down there in my new car and I can hardly wait to reconnect with people and to meet new friends!  I will write a blog post about that once I get back.

Now it is time to get ready for work! Happy Friday Ya’ll!  Here’s a little happy tune for you.

Illustrated Personal Rant Session


Once again, I’ve let slip my morning writing habit. Of course, this time it has been in favor of spending the time drawing instead of writing. So creatively, I feel like I’ve been accomplishing something. Unfortunately it doesn’t really translate to the blog. Or does it?

http://instagram.com/p/y3RUhTh8O0/?modal=true

Despite all my fun drawing in the mornings, I’ve been feeling a bit low lately. I guess a lot of that can be attributed to the massive quantities of snow we’ve been getting. I get to feeling a bit trapped. When we don’t have 5 foot snowbanks lining all the roads, I like to go out for walks with Dave, or by myself just to clear my head. While it’s not impossible to take a walk right now, it’s not exactly safe. Plus, it’s pretty stinking cold out there too. Normally I enjoy the snow – it does make everything look pretty.

http://instagram.com/p/y_8snlB8IS/?modal=true

I also get to feeling low because I sometimes feel like I just don’t get other people (aside from Dave and my immediate family… though sometimes I don’t get them either, hah). Or I’m frustrated that they don’t get me. I start feeling sad because I think of the few people in my life that I’ve really connected with, and they all live far away or they aren’t friends with me anymore for some reason or another.

http://instagram.com/p/yrXtiUB8CA/?modal=true

I really want to have deep, meaningful relationships with people, but most of the interactions I have are insanely superficial. Especially with certain people I work with, who are constantly judging others by physical appearances and ridiculing their clothing and hair choices. It’s like high school all over again. I try to remain above it but it’s hard when it hits that nerve and reminds me of being 15 and awkward and not fitting in.

Lastly, I get down on myself because I think about all the things I’d really rather be doing with my life, and I start feeling really anxious. Like if I don’t quit my job and start DOING a bunch of things, I’m never going to get anywhere in life. First of all, I can’t just quit my job because I’m getting paid better than I ever have before, plus the insurance is great (except for their stubbornness about paying for my dental work), and oh, I am still working off these $#&#*)&( student loans.

http://instagram.com/p/zEI9NHB8AO/?modal=true

I know I need to make a solid plan. I have to believe in myself first, and sometimes – especially when I am feeling low like this – I find that really hard to do. I’ve accomplished a lot of things in my life so far, but somehow I forget all that and I see myself as inexperienced and useless. It’s like my mind gets clouded and I forget that I’m intelligent, I have artistic ability, I have a bachelor of science and a bunch of certificates. I escaped what is most simply described as a religious cult (this is where I lost a lot of friends!). I’ve had a variety of jobs and I was never fired from any of them – I left them all on my own accord. I’ve survived numerous surgeries and medical torture procedures. I’ve seen close family through major surgery and depression. I’m a survivor!! Why is this so hard for me to take strength from?

http://instagram.com/p/ywjFrQB8Ax/?modal=true

Ok. I feel a bit better for all this ranting, even if it makes no sense to anyone else. I hope you at least enjoy the pictures. These are some of the Zentangle drawings I’ve been doing for the past month. If you want to see more, just click on one of the images and it should take you to my Instagram page. Follow me and like my pictures to give me a fleeting sense of worth!

Snowy Snowfall


Hey ya’ll!

I’m sitting here at my kitchen table while the snow falls lightly outside my window. We actually got let out of work early today because of the weather, although it’s not supposed to pick up until tonight. According to the predictions, it’s going to be a doozy. Up to 30″ in some spots. There’s a driving ban in effect at 9 pm tonight.

I’m always excited to have a snow day. There’s something really cozy about looking out the window and seeing nothing but drifts of white snow as far as the eye can see, and knowing that you don’t have to leave the house for hours. As long as the power doesn’t go out….

Dave and I have already got the extra blankets out, buckets for toilet water, and bottles and jugs in the kitchen for drinking, hand-washing and tooth-brushing water. I don’t know if anyone is familiar with that experience, but it’s quite unpleasant to be without toilet-flushing water.

When I was growing up in Southeastern PA, I don’t remember that we ever lost power from a snow storm. I’m not saying it didn’t happen, but I’m quite certain it did not happen. Of course I can count on one hand the number of huge snow storms we had back then. I only remember losing power during summer storms, and never more than a few hours at a time.

It wasn’t until we moved to Vermont that we had the experience of lost power during a winter storm and for days afterwards. Fortunately in Vermont, most everyone has a wood stove or two in their house that is the main heat source. So losing electricity is more of an inconvenience than a health hazard. We could even bring in buckets of snow to melt and use for toilet-flushing.

Here in Connecticut, we do not have a wood stove, or even a fire place. The last time we lost power during a storm was during the “October Snowstorm” in 2011, when over a foot of heavy, wet snow fell and knocked down trees and power lines all over New England. Our power was out for an entire week. A week! During which I had to report to jury duty! Even though it was October, it was still quite chilly, and we would go to bed wearing thermal underwear under our pajamas, and sweatshirts with the hoods up. Then piled on the blankets and comforters and a cat for good measure.

Luckily, we do have a propane stove, so we can make tea and warm food, which is especially helpful when you’re freezing. We can also warm up water to bathe in, and when you boil water in a cold room, it does help to bring up the ambient temperature just a bit. A little bit.

I’m crossing my fingers that we don’t need all this water we’re stocking up, and that we won’t have to shiver under blankets any more than usual. I’m looking forward to a snug night of cuddling and catching up on reading materials, and perhaps a bit more Zentangling. If it were up to me, I’d hibernate like that for the whole winter!

Enjoy the snow, folks! Unless you’re reading this from a non-snowy place, and then enjoy your normal life! 🙂

Dave jumped right in after the big storm we had in 2013. I have a feeling it might look like this again tomorrow.
Dave jumped right in after the big storm we had in 2013. I have a feeling it might look like this again tomorrow.

Happy 2015 from EEC Chick!


Bitmoji Me
*Note, cartoon version portrays more fingers than the real life version actually posesses.

Happy New Year!

I’ve been away from WordPress for a couple of weeks now due to all the holiday fun that was going on, but now it’s a quiet, work-free afternoon and so I cannot delay posting any longer.

My holidays were quite lovely and I hope yours were too. I always enjoy spending time with my family, and now that everyone is grown up and off doing their own thing it is even more significant when we can get together for a few days. We had a fun couple of days filled with food, games and winter walks. You can’t get much better than that!

Dave got me a laptop for Christmas, so that I can write more (and so I’ll stop using his). I’m pretty excited, as I haven’t had a personal laptop in ages. This afternoon, using my new laptop is proving difficult because the cats are taking turns climbing all over me while Dave is napping on the couch. Honestly. I don’t know how people can work from home when they have cats. Whenever I try to do anything at the table, someone’s got to be climbing all over it. It’s like having kids who will never grow up.

Ahem. Anyway, since it is January 1, 2015, I suppose I should do the typical reflection on the past year and predictions or goals for the year to come.

2014 started off on a low note, as one of the first moments involved going down to New Jersey for Gram’s funeral. The up side of that was getting to see a lot of family who we really don’t see much of otherwise. Gram’s passing was tough and I think it cast a melancholy hue over me for much of the early part of the year. It also got me thinking about death in a spiritual sense, which was one of those things I had been ignoring prior to that because it was too hard to think about. That’ll be something for another post (or another blog entirely). At work, I was able to move laterally within the company, and so started an intense journey of learning the ropes of a whole new department in the midst of one of the busiest years yet. The plus side of that is that I earned about 25% more this year than I did the year before. Woo hoo! I probably also worked 25% more hours than I did the year before too, so boo that. But I do appreciate the extra dough, at least until tax time rolls around and then I may have other feelings. Overall it was a year of major growth for me. I’m talking spiritual, emotional and skill-set growth, not waistline, though that may have expanded just a bit too. I’ve accomplished my goals of writing more, spending more time ‘offline’, and finally, of joining Toastmasters again. Missions accomplished.

2015 is off to a good start so far. Today we had a leisurely morning with a late breakfast, and then we took a nice walk on the rail trail. It was cold but there’s not one particle of snow on the ground so it doesn’t feel like we’re in the midst of winter. I’m sitting here with my new laptop, drinking a bottle glass of wine, I have a cozy house with a handsome man and two fuzzy kids, what more could I ask for?

As far as the blog goes, I think I did a pretty good job of keeping up with posting throughout the year, despite hectic schedules and bouts of writer’s block/procrastination/self loathing. I’d really like to post more often, but let’s be honest, how much can I really write about EEC? I am mulling over some ideas for this coming year, such as expanding the blog (or making a new blog) to cover more topics that I’m interested in, like environmental issues, mindfulness/meditation, religion/spirituality, vegetarian/veganism and things along those lines. I do still have EEC-related things I can write about, especially as I am about to embark on a new dental adventure, if my insurance company is willing to cooperate.

I’ve also been contemplating being more open with owning my blog. I know most of you who read it know my real name, and I’ve probably let it slip here and there, but I’m going to change my pseudonym to my actual name. If I ever want to get anywhere as a writer, I need to own up to the things I’ve written, right? It’s a little scary for me, because despite all I’ve written about overcoming my fears of rejection and shame about my physical issues, I am still hesitant to open up fully. I still have moments of worry that people are going to take the things I’ve written and use it against me. Even if it’s just superficial, i.e., calling me a freak or a weirdo because I was born this way. In my life I have come across some rather superficial people who cannot get past my physical anomalies. I tell myself that it is their problem, not mine, but I still can’t help but feel a bit hurt about it. I think that’s a good reason to keep pushing myself to share though. As I’ve written before, outside the comfort zone is where the magic happens!

Happy New Year to you all, and thanks for keeping up with my blog all this time. May 2015 be a happy and prosperous year for you.

Namaste

Toastmasters Ice Breaker Speech


I mentioned a couple of whiles ago that I was going to join Toastmasters again. I’ve been going for about two months now and last Monday I did my first speech, which is known as The Ice Breaker. The objective of the speech is to introduce yourself to your audience and demonstrate what speaking skills you already have in 4-6 minutes. I actually already did the Ice Breaker speech at the previous Toastmasters club I was a part of, but I figured that I would just start at the very beginning with this new group. Of course I wrote a new speech too because the other one didn’t seem fitting anymore. Anyway, here is the text of my speech. I’ll have to record it next time!

Uniquely Fortunate

One of the first things people will say when a child is born healthy is “she’s perfect with all 10 fingers and toes.”  As you may have noticed, that descriptor was left off my birth announcement, as I was born with a rare condition called Ectrodactyly-Ectodermal Dysplasia Clefting Syndrome, or EEC for short. The most obvious symptoms of this condition at the time of my birth were my complete bilateral cleft lip and palate and my missing fingers and toes. Being born this way meant that I had some hurdles to clear in my early life and certain issues, both physical and emotional will stay with me for the rest of my life. But I didn’t let that get me down. Instead, I view my circumstances as uniquely fortunate.

I was fortunate to have been born near Philadelphia because that meant that I had access to skilled doctors and quality medical care to treat the various issues related to my syndrome. I was fortunate that my family was loving and accepting of me and that my parents never told me there was anything I couldn’t do. I was allowed to behave as any other child, and despite having a lot of surgery and medical treatments, I think my childhood was normal.

Let’s divert from EEC for a bit and talk about some of my interests. There are two things that I have always been passionate about and consider to be important aspects of what makes me ME. First I have always loved to create. Whether it is drawing, sculpting, writing or telling stories, I love the feeling of energy that flows through me when I am in the creative zone. I was fortunate to have a natural talent for art and never thought that my hands would hold me back from that. The second thing I have always held dear is a love and appreciation for nature. I was fortunate to have parents who valued this too, and as a child I got to spend time exploring in the woods, watching sunsets on the beaches of Cape Cod, observing the stars on summer nights and learning from everything I saw. Even now I can spend hours just wandering around outside, looking at plants or insects and being awed by what I see.

When it came time to decide what I wanted to do with my life, I had some difficulty settling on any one thing. For a short while I had the idea that I would write and illustrate children’s books for a living. This was mostly based on a fantasy I had of living in an old farmhouse with a massive art studio in the attic, and apparently a very wealthy husband to support my artistic endeavors. Unfortunately there was no such husband in the picture and I knew I needed to find a more reliable way to earn a living. It took me a few years of wandering before I figured out a career that would allow me to combine my passion for creating and my love for nature – Landscape Architecture.  Before you envision me walking around a property with a weedwacker, let me clarify. Landscape Architecture is the art of designing beautiful, functional and meaningful outdoor spaces. LA requires a vast knowledge of history, art, architecture, psychology, botany and design. It is not the same as landscaping, which is what the guys with lawnmowers do. I enrolled in the LA program at UCONN and threw myself into it wholeheartedly. I was really psyched to finally have found my niche and be able to combine so many of my interests in one profession. When I graduated with a BSLA in 2008, I was ready to hit the ground running. Unfortunately, this was at the same time as the 2008 stock market crash, and suddenly, not one LA firm was hiring. Fortunately, I had a lot of clerical skills and I was able to find work in the corporate world.  Fast forward several years and I am now working right down the road from here at an additives manufacturing company, which is just a fancy way of saying a chemical plant. I work in the marketing department and while it’s not landscape architecture, it does allow me to flex my creative muscles a bit and it often pushes me out of my comfort zone.

I’d always felt like EEC was only a small part of who I was, but after graduating and while being underemployed, I entered a period of self-reflection. I decided to look up an organization I’d known since childhood – The NFED. NFED stands for National Foundation for Ectodermal Dysplasias and it is an organization for people like myself who are affected by various forms of ectodermal dysplasias.  I joined the organization with the idea that I could be an inspiration to others, but what really happened is that I met a lot of kids who really inspired me. Comparing stories with the children and other affected adults led me to realize just how much EEC has affected me. As I’ve gotten older I have l learned to cherish how unique EEC makes me, and thanks to the support I felt from my NFED friends, I even started a blog about my life with EEC. Being open about my syndrome has made me feel better about who I am, and it makes it easier for me to talk about my issues without feeling uncomfortable. Blogging also offers me a challenging outlet for my creativity.

I hope that by being involved in Toastmasters I can refine my speaking skills and become more comfortable in front of an audience. I would like to use my talents and my experience to become a motivational speaker someday, or maybe an educator of some kind. I would like to share my fortune and pay it forward to help others as many have helped me.

EEC Chick is One!


One year ago today, I put on my big girl panties and I started this blog. You can see the first post here.

http://instagram.com/p/bNDxJtB8Dj/

It hasn’t been as easy keeping up the blog as I’d expected, but it has been rewarding. Writing has long been a therapeutic pastime for me. I’ve gotten lots of positive feedback from people. People with EEC have told me that they really relate to my stories and they have felt many of the same things that I’ve felt. People without EEC have said that my writing has helped them understand how it feels to be affected by a syndrome like this. Hopefully I’ve made a lot of people laugh too. 🙂

This summer, while I was at the NFED Family Conference, I began telling someone new about my blog. A mother of a boy affected by EEC was nearby. She opened up her bag, pulled out a stack of papers and gave them to the woman I was talking to. It was print-outs of my blog! She said that she always printed them out to show her son. I was pretty excited to see how something I had made had such an impact on someone else. Something I’d made while sitting around in my pajamas and drinking tea, no less!

So, a heartfelt thank you goes out to all of you who have supported me and given me feedback this past year. I appreciate it more than you know.

Namaste

PS. Did you know that I also contribute to the NFED blog? My latest post can be found here.

Calm on the surface, but paddling like mad underneath.


Hello! Just a quick update to let you know that I am still alive, although rather tired.

Earlier this week I took a quick trip to Chicago for work, but ended up stuck in the airport for nearly the whole day on Tuesday. I didn’t get home until 1am, and I’ve been feeling pretty sluggish ever since.

There are so many things I want to write about, and hopefully I will get into a better routine soon. I have this idea that I can wake up at 5 am, meditate, go for a run, write for an hour, have breakfast, shower and dress for work by 8am. Which, really, seems doable, right? I mean, it’s three whole hours at my disposal. There was a time that I used to get up and walk 3 miles and do a nice yoga sesh before breakfast. It was awesome. I can do it again, right?

I want to write about confidence, and how it comes and goes in waves. Sometimes I am taken back when I notice how nervous and uncertain I really am underneath my outwardly calm persona.

I want to write about how I just spent three days among strangers and not one of them seemed to notice that my hands were different. Or maybe I was just too oblivious to notice.

I want to write about being in an airport, surrounded by hundreds of people and making eye contact with some of them and wanting to know their stories, but not knowing how to begin. And in the odd moments of actual conversation, how I suddenly became nervous and wanted them to go away because I couldn’t hear them very well.

Or how, going out to dinner with colleagues in a very crowded and noisy restaurant was so frustrating because I could not hear the person on my left at all. Fortunately, he wasn’t talking much. Would having a hearing aid have helped this situation, or would it have just made everything else louder? Do I really want to go back to the hearing specialist and risk getting a glob of silicone stuck in my ear again?

So there’s some topics to pick up on next time I have a moment.

For now I shall catch up on sleep.

Love,

Me

 

 

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…