Honey, Honey?

Oh the things we try! Some work. Some don’t. Some don’t make a difference. As you know, I was born with EEC and one of the culprits we have to put up with is the never-ending eye problems.

One of the problems I have is very,very dry eyes. I’m at the point that drops do not work. I have to use ointment. Even though I put gobs in my eyes at night, I still wake up with my eye lids stuck to my eye balls.I squrim and wriggle, put my hands over my eyes, and scream inside from the pain.When you try to open them, you can feel the lining of your eye-ball ripping off.

I asked a question on one of the ectodermal sites on Facebook  ,what do you do for very dry eyes? One of them wrote and said they use Honey! Honey, I ask?

She was from Australia and she said her doctor had her using honey drops.So, I read up on it.I thought I would give them a try. I ordered them. They came all the way from Australia.

When they got here, I was like-do I use them or not? Will it damage my eyes? I mean, I am putting honey in my eyes! It is in an official looking box,right?…ha☺ Take a deep breath girl. There are others that use it and they are not having any problems. Honey is a natural cure for things.I take a deep breath and say, ok, here we go! I wash my hands real good. Put a drop on my finger. Insert drop in my eye…..HOLY CRAP!!! It burns like the dickens!! I know it said it would burn…BUT!!! Ok, can I see? I’m not damaged for life am I? It’s getting better. My eyes are watering. Tears are running down my cheek. Wait!! TEARS!! I have TEARS!!!

Now, years ago my eyes would water all the time and I would look like I’m crying The doctors would say I had dry eyes. But, they are not dry, I would say.They water all the time. Of course, that is one of the symptoms  of dry eyes. As I got older and dryer, my eyes do not water at all. So, you can see why I was so excited about tears running down my face.

The next thing I wanted it to help was the night-time lid to eye sticking problem. So far, it has helped. At first, I was not sure that it helped till one night I did not use it because of another problem I was having with my eyes. Plus,, the stinging that happens when you put the drops in your eyes. Well, after that night with the lid sticking to the eye again, the stinging is not so bad after all.

I’m still in the experimental stage, but, I do have to say that it is helping with the lid-eye problem.My eyes seem to be clearer. I’m not saying it is for you or it will help you, but this is my experience and the out come so far,even though it stings when you put it in, your eyes do feel better after the stinging subsides. And there is a plus side too-you taste honey every once in a while☺

Try

“Try”

Put your make up on Get your nails done Curl your hair Run the extra mile Keep it slim So they like you. Do they like you? Get your sexy on Don’t be shy, girl Take it off This is what you want, to belong So they like you. Do you like you? You don’t have to try so hard You don’t have to give it all away You just have to get up, get up, get up, get up You don’t have to change a single thing You don’t have to try, try, try, try You don’t have to try, try, try, try You don’t have to try, try, try, try You don’t have to try You don’t have to try Oh Get your shopping on, At the mall, Max your credit cards You don’t have to choose, Buy it all So they like you. Do they like you? Wait a second, Why should you care, what they think of you When you’re all alone, by yourself Do you like you? Do you like you? You don’t have to try so hard You don’t have to give it all away You just have to get up, get up, get up, get up You don’t have to change a single thing You don’t have to try so hard You don’t have to bend until you break You just have to get up, get up, get up, get up You don’t have to change a single thing You don’t have to try, try, try, try You don’t have to try, try, try, try You don’t have to try, try, try, try You don’t have to try You don’t have to try, try, try, try You don’t have to try, try, try, try You don’t have to try, try, try, try You don’t have to try You don’t have to try No Oh You don’t have to try so hard You don’t have to give it all away You just have to get up, get up, get up, get up You don’t have to change a single thing You don’t have to try, try, try, try You don’t have to try, try, try, try You don’t have to try You don’t have to try Take your make up off Let your hair down Take a breath Look into the mirror, at yourself Don’t you like you? Cause I like you (by Colbie Caillat)

 

Isn’t this like our world?…well, it was mine and sometimes I still fall into that boat. When I was younger I tried so hard to fit in, to be “normal”. First, you have to try to prove to people that didn’t know you that just because you hands look different that you can still do everything that they do. They either want to do it for you or they watch to see if or how you can do it. I tried to hide my hands most of the time. It was so hard to fit into their normal. It wore you out trying. I spent so much time trying I forgot just to be myself.

I didn’t want to do anything that would cause attention to me. So, I became shy in a way. Plus, all the other medical things that I had like all the surgeries, bladder problems that kept me from participating in sports and outings, and figuring that others really didn’t want to be around me…. They were just being nice. Maybe, although I tried to fit in, I still did not try hard enough to be myself.

Yes, as I got older, I became better at being myself. I still do have to put my game face on from time to time. I am better at accepting me for me. So, maybe my lyric should be…Take my makeup off. Take my wig off. Take a deep breath. Look into the mirror, at yourself. Don’t you like you..yes, I like me ♥

The Battle of Hair

I’ve noticed lately on all the Ed sites on Facebook that the women have been talking about their hair…or I should say.. lack of. We have always heard”your hair is your crowning glory” ! So, it can be very depressing when you are losing your hair.

When I was a baby/toddler, my hair was slow to come in and grow.  When it did start coming in, it was  so blonde it looked white and stuck up everywhere. It was hard to manage. My momma would put Vaseline on my hair just to try to lay it down. When I got older and my hair was a little longer, momma would put pin curls in my hair and the curls would stay all day long. My hair was so coarse and had lots of body. My hair was not really thick but it looked thick because of all the body.

My sister and me (pin-curls)

My hair remained blonde and very slow to grow when I got older. All my other friends would get their hair cut and before you knew it their hair would be long again. My hair grew so slow I didn’t even want to get a trim. One day I got a wild hair…lol…and I thought I would get my hair cut short. My cousin got her hair cut and it looked so cute. Well, I hated it on me!! I cried for days…no months!! It took FOREVER for it to grow back out! I never got my hair cut again, except for little trims.

I was always afraid to go to hairdressers. Some would get so scissor happy and before you knew it they had cut too much. Every time I went to the hairdresser,I would have to STRESS…”do not cut much of my hair”!

When I got older, my hair got a little darker. Kind of had that mousey color. I was so use of my hair being blonde-blonde. I started getting highlights. It probably was not good for my hair as fragile as it was, but it seemed to be ok. I did use lots of conditioning treatments.

In my 30’s I started noticing my hair getting thinner. I tried all sorts of stuff for thinning hair, but none worked. Then I had a little bald patch. I went to the dermatologist and he did scrapings, biopsies , and more treatments for the scalp, but nothing worked. My hair kept getting thinner and thinner. I tried  hiding it by fixing my hair different. But, by my early 40’s, I had to try something else.

I started wearing the hair pieces that you clip in. Soon those started breaking my hair off, which made things worst. I tried a wig. I hated it!  I was so active in playing sports , getting in the pool or ocean, riding in the boat at the river…..I was always worried the wig would come off. In fact, on two occasions it did. One playing volleyball and the other in the ocean when a wave hit me! I was devastated!!!

That’s when I went another direction. I went to this hair place where they measure your head and make a hair piece and glue it to your head. You treat it like your own hair. I loved it. No worries of the wind blowing your hair off. Well, that didn’t last long. I started having a reaction to the glue or something. It broke my scalp out and it smelled. They tried different glues , but nothing worked. They finally sewed clips in the hair piece, but then I was back to square one.

I finally broke down and tried the wigs again. It was a lot of trials and errors to find one that didn’t look like a wig,or made me look like I had too much hair, and find the right color. Some wigs I tried I had to keep because they had no return policies or you could only exchange one time. So, always read the wig companies return policies .I have a small head, so petites fit the best. The only thing with that is they don’t make many styles in petites. .

You still have to watch when people or kids want to touch your hair or if someone is hugging you. You have to be careful when you scratch your head or you might readjust your wig. Watch out if the wind is really blowing.If I know I’m going to do anything active, I use the wig tape and it does hold it pretty good They can be hot and itchy at times. It is something that you have to get use to. At times, I think of going bald and forgetting it. Some people can pull that off.I just can’t bring myself to do that yet.

Maybe one day they will invent something better or better yet something that will grow hair. I know the NFED’s researcher are now able to grow new skin and hair on mice……so, who knows!

  Those curious locks so aptly twin’d,
Whose every hair a soul doth bind.
~Thomas Carew

Women talk a good talk, but they still feel the need to wear heels, shave their legs, and bat their eyelashes for men.By: shekhar

 

A Man and his Jacket

Well, if he looked like this, you should have said kiss me and follow me and I will take you to your jacket 🙂

Uncommon Heather

A few months ago, we had a huge event at work. It was a celebration for a new factory we built. At the start of the lunch, which coincided with torrential downpours, I was handing out name badges and table assignments to the 150+ people who were flooding into the tent.

In the midst of the chaos, a man approached me, holding a bundle in his hands. “Do you have some place I can put my jacket?” he asked. I took the folded-up jacket from him and looked around the crowded tent. My first thought was that he should just put it on the back of his chair like any sensible person would do, but not knowing who he was, I didn’t say this out loud. I told him I’d put it in the kitchen, and I fought my way through the gaggle of people, through the rain and back into…

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The Running Nose

    Since I’ve gotten this nose issue..cold maybe? The nose has been on my mind. So, let’s talk about this nose…lol

Well, I was born with bilateral cleft palate and lip which in turns affects the nose. I have had several surgeries to correct this. The last surgery, I had bone from my skull and cartilage from my ear to build up my nose. They tried before this to use a type of plastic thingy, but my body rejected it and I had to have it removed. Nose surgery can be painful. You do not want anyone close to your nose and I hate it when your own hand accidentally touches it. I always had splits in my nose and packing up my nose after surgery.This all makes it very hard to breath, so I would sleep in a recliner most of the time.The fun time starts when you must have all this stuff up your nose removed!! Then you got to clean your nose everyday with a Q tip and maybe some medicine. Your nose is very sensitive and you really don’t want to touch it. It gets better as days goes by, but my nose was still a little sensitive a year after the surgery. I really should have had more surgeries, but I was so tired of surgeries I did not want anymore. So, my parents let me have it my way. I wish now I went ahead and had more done.

Oh thou nose…why do you have to run all the time? It always picks the time when you are talking to someone or when you are trying to do something. Not that it doesn’t do it at other times, but this is when I notice it the most. I remember one time I had my gloves on (I’m a nurse) and holding this kids hand and holding him down while I was sticking him….and, yep, you guessed it…the nose starts running (along with the eyes). There is no way to wipe it cause you really don’t want to let this little squirming kid go. I mean I got a great hold on him. Let’s just hope the parent was not paying attention to my runny nose and eyes….lol 😀

I’ve tried allergy meds, but they just make my eyes dryer and I don’t need that! (EEC has problems with dry eyes that lead to corneal scarring).So, I just do the sniffles. Sniffles here and sniffles there becomes sniffles everywhere..lol

Lets not forget about the sneezing!! I sneeze a lot and sometimes I will sneeze 10 times before I quit. When I’m at home I just let it go, but I try to hold it back in public places :)…..sometimes 🙂

Of course, sometimes all of this leads to sinus problems. This year I really have had a round with them. I use the saline sprays and the neti pot. The ENT put me on Flonase to use everyday since these sinus infections this year. He told me if I have another infection he will need to do surgery to clean my sinuses out. Yipee!!..not!!

Some of us EEC peeps call ourselves the “snot making machines”..haha 🙂 We all have this problem. Our noses are either running or the mucus becomes very hard crust or rocks. These are very hard to get out and sometimes painful. Sometimes it causes nose bleeds. Vaseline helps keep things soft and also helps with the nose bleeds.

So..sniff.. sniff.. with this cold or whatever I got has got me sniffing more than usual and I’m chasing this nose of mine even more….so if you see him…catch him for me 🙂

 

NFED Conference

Well, I’ve never done a blog before….but, here I go. I was born with  EEC (Ecotrodactly-Ectodermal Dysplasia Clefting Syndrome). It is a form of ED (Ectodermal Dysplasia) . I will talk more about this in my other blogs. But, today I’m going to write about the NFED  conference.

EEC paper

When I was in my 20’s, I was giving a paper from one of my reconstruction surgeons  that was talking about EEC. It had a picture of a girl who looked a lot like me. It was like a “wow” she could be my twin! But, even though it amazed me, I thought, well, I will never see a person like that except in text books. Who knows where she lives? So, I put the papers in a drawer and forgot about them unless I came across them.

Well, when I was 52 and had already quit work due to my eyes getting worst (this is one of the things us EEC’s has to deal with), I started looking on the internet. I found a group that mentioned EEC and I went there…it was the National Foundation for Ectodermal Dysplasias(NFED). They had tons of information on their site and I noticed they were going to have a conference in Orlando, FL. I talked to my husband about going and we decided to go.It was a GREAT decision!…not only for the information, but I met people who looked like me! There were little blonde headed kids running around, some were on the floor comparing their hands and feet…little me’s here and there! Then I met the adults (some I had already met on fb) and we had so much in common. We all became family. We now call ourselves brothers and sisters from another mister 🙂 That little girl from that paper long ago came to life. It wasn’t a one or two chance of someone being born like me that you will never see! It all became real. it was a very emotional time!

The NFED does wonderful things for all people who has some form of ED and their families. They raise awareness, gives information, do research, gives support, help with treatments, but most of all they bring us all together! We get to see we are not alone, it helps our self-esteem, and the little ones and their families see the adults and know that everything is going to be ok.

If there is a donation you would like to do, this would be a great one.Their money goes to helping those to get dentures or implants,for research and things that will help our condition.

NFED Conference 2012

NFED Conference 2013

NFED Conference 2014