Hearing Loss

 I saw a post today on a Vitiligo page I follow

on IG. It said vitiligo can affect hearing loss.

I was like really? Wow! Now, I have partial hearing loss

in both ears & wear hearing aids. I've always figured

it was due to my numerous ear infections growing up.

However, now I wonder if the Vitiligo has also played a part.

In doing some online research, it seems up to 38% of 

people diagnosed with Vitiligo, can also experience

some degree of hearing loss. So hmmm

I'm not quite sure exactly why I do have hearing loss.

I can't point to one thing & say this is why.

So maybe it is the combination of my

ear infections along with my Vit.

My Hands

 I know I haven't posted in a long time,

but I was going through photos I had

taken last year, & noticed how this 

one photo shows my hands with my Vitiligo.

And since this is Vitiligo Awareness Month,

I thought it was perfect timing.

I am only showing my hands as the

photo isn't necessarily safe for all eyes.

Photographs by Jazz & Update

I came across an article on People.com

about a Photographer who has Vit.

She also has a photography project

featuring others with Vit as well.

You can find her website here.

While I'm here, thought I would

do a small update. I didn't realize it

had been so long since my long post.

I am now working Full time in

a hotel & as such, my spots are 

growing quite a bit. It hasn't really

been an issue at work for me. 

Bullied, Sings For The Pope

I came across this article today on People.com & wanted to share. 

A 17 year old young lady who has been bullied because of her Vitiligo

sang for the Pope. 

You can read the article here.

It does get better. Just remember that. Take life one day at a time &

know things get better.

Dentures - Day 1

Well I apologize for not posting more about the journey to my dentures. It was a lot of back

& forth trips for quick visits. Today was D -Day. I got my dentures. I thought I was prepared for them but nope I wasn't. It is really quite a sight to look in a mirror & see a full mouth of teeth after not seeing them for 5-7 years. 

They feel very odd and out of place in your mouth - even if they do fit the shape of your mouth. 

Very weird. A friend said my mouth would feel smaller and she is right. I was prepared for having to adjust to eating with them. I was NOT  ready for it to seem nearly impossible to eat with them. I can kinda bite with them but chewing??? Forget about it. That will take a lot of practice as I feel like I have forgotten how to do that completely.  

Drinks are hard too & so is talking - or it seems that way to me. My daughter says it can be a little hard to understand me sometimes.  Also, my mouth seems to make saliva in excess amounts while I wear them. Very annoying. Swallowing a lot or trying too to get rid of the saliva. 

My gums were sore when I took them off this evening. We'll see how day 2 goes.

Goo

Disgusting goo! Yesterday I had the molds done for my dentures. This involved lots of
goo on two plastic plates being put into my mouth one at a time. The goo is extremely thick
paste and just awful. The top mold didn't want to come off my gums and it hurt to be removed.
I also about choked on the top one as my gag reflex really acted up. But thankfully they are done.
I go back on the 31st for adjustments. I think in total I'm looking at another 3-4 weeks before I have my dentures.

Afterwards, we stopped by the butcher shop to get some meat for dinner. Yay meatloaf b/c its soft!
There was an older gentleman with vit on him. Mom & I chatted with him a bit but while he knew he had it, didn't seem to know much about it. His vit was much more spread than mine and he did say it had spread a lot in the past year.  The man didn't know it was an autoimmune condition though.

I have a heart

developing on my left cheek. I wondered how my face would react to the surgery. I've healed very, very well. The heart isn't a definite vit spot yet but it's developing for sure. I took a picture & lightly traced it to help show it better. I think its a double heart but I can't be sure. What do you all think? 

I noticed I also have one my neck too. 

I have a spot that was a butterfly on my arm but its changing slightly :(

There is also an umm rather falic one located on an inner upper thigh too.

That one has been around. I won't show it but you can imagine

what it looks like lol. Oh btw, I have started gently brushing my

gums now. Was given the okay by the surgeon.

I go on the 16th for my dentures molds.

Dental Work

Today marks one week since I had all remaining teeth removed. I was asleep during the dental surgery thankfully. I am healing well and am eating soft foods with little pain. In a week or two I will begin the process to have dentures at 36 years old. I didn't always have dental problems. I developed them after developing autoimmune & Vitiligo.  I am looking forward to not being a monster or addict any longer once I have my dentures.
I had several bad experiences over the last 5 years with dentists which scared me from them.
Being called an addict by one (which I never was) and painful experiences at another will do that.
I tried to take care of my teeth but they continued to decay. I believe I have another autoimmune condition and have written about autoimmune here.
I am hoping to start seeing an autoimmune specialist here in the near future & possibly get a better idea of what exactly is going on with my body. Why,even with caring for my teeth, did they continue to decay?
I'll be sharing my dental journey as I go along.

World Vitiligo Day 2014

I did a small photo collage to show off some of my spots for World Vitiligo Day 2014. 

Didn't realize until I saw the photo of my face that is progressed to my lips. Oh well.My spots

are more white than the show in the photos. My graphics program changed the color

slightly on them. 

 I do have it elsewhere but we won't get into those places lol

As always rock the spots!

Folic Acid & B12

There was a post today in Vitiligo Pride Facebook group, (which if you are on Facebook, & comfortable discussing your Vit, I highly suggest joining.) by a member concerning Folic Acid. She had never been told by her doctor that she may need it. I thought I would do some reading & research about it as I didn't know either. It seems that the combination of Folic Acid & B12 can have benefits for those of us with Vitiligo.

You can read more at these sites.

Healing Vitligo

Vitiligo Support

I would also suggest this link to familarize yourself

with which herbs to avoid that can do more damage

than good since we do have an autoimmune.

Research Project

I'm starting a research project. I want to know how many of us have Vitiligo & another autouimmune condition. It doesn't matter which came first, if you have documented diagonsis of both, let me hear from you. I want to see what the numbers are. With all of the research I have done, there defintely seems to be a pattern.

So come on, let me here from you.

You can read my previous post about autoimmune here

Next Top Model

So this was posted to my Facebook by a family member. I wanted to verify it before I posted about it here - just in case it wasn't true - we all know how Facebook is. But yep sure enough is competing.. I think this is so wonderful - to be competing to be a model ( which is tough enough we know ) and to be doing it while not hiding her vitiligo - that is so great. What a great message to send - that you can do this & be two colors - or have what others might consider imperfections. It really is great to see.

You can vote for her here. I haven't watched the show before but will be keeping tabs on her.

Vitiligo Video On Upworthy

There is a great video featured on Upworthy about a woman taking off her makeup
& showing her Vitiligo on her face, neck & hands. It has a very positive message.

Check it out here.

Keep Calm

Saw this this morning & wanted to share here. 

Way We See Blackness Article

Now I admit I am white. But most of my childhood was spent in South Carolina, where race is definitely a big thing in the culture there. And I have Vitligo. I thought this would be interesting to share. Vitligo as we know makes us all lighter in color. This is defintely most noticeable on dark skinned people. Take a look..leave feedback if you want - I always welcome it, I came across the article on Upworthy

Article Link

The Autoimmune Side

In addition to our loss of color with having Vitiligo, we do need to consider that it is in fact an Autoimmune condition. This means there can be a whole range of issues with our bodies besides just the loss of color. Of course, the loss of color is the most noticeable with our condition and gets the most attention.

I've been doing some reading this morning about Autoimmune to learn more & familiarize myself
with this side. I have fatigue a lot - doesn't seem to end no matter how much sleep I get either and i also have MAJOR teeth issues. Both seem to be connected to autoimmune conditions and very common with them. Hmmm gets me thinking for sure. My teeth were NOT this bad before I
developed the Vit and have deteriorated very rapidly in the last few years since I've had it.

Here are some websites to check out for more information.

Autoimmune fact sheet

Fatigue & Autoimmune

It's also common to have more than one Autoimmune condition. Not sure about that with me but
I definitely hit on the teeth & fatigue issues for sure. What gets me is that, neither of the doctors I saw about my Vit, ever talked to me about problems with Autoimmune I might encounter. Is this aspect of Vit overlooked? It IS AN AUTOIMMUNE so why not bring it up to us? We do need to know what might happen & how to address or combat it. I'm taking vitamins & B12 for energy but it doesn't seem to be helping me at all. Doctors definitely should inform those of us with it. We need to treat the issues in addition to the color loss. I can deal with the color loss - I've talked on here before about my feelings of having vit. But the issues i am getting from having an autoimmune are really starting to affect my life - and I need more information. I guess its good we have this thing called the internet so that I can educate myself on it.

On that line of  thinking, I looked to see if Autoimmune plays with hearing loss. I've been part deaf most of my life & for no reason - that I've been given anyways. I found this article. Hmmm another makes me think.

Autoimmune Inner Ear Disease 

American hearing

Fact sheet

Vestibular

Vit & Tattoos

I came across this graphic in the Vitiligo Pride group on Facebook. I just love it! I have vit & I have tattoos.
In fact, on my tribal bear tattoo, it has developed a bit of vit itself. Which I love & think it represents me even more. I'm including a pic of the bear vit as well. Just thought the cartoon graphic was really cool. Our spots are unique, as well as our tattoos ( for those who have them ). Both tell stories :)

Vit On My Eyes

A friend and I were at the beach today. It was a cooler overcast day at the beach.
Beautiful weather! We took a picture on the pier. Looking at the picture later, it was
evident that I have developed Vit around my eyes. I had thought maybe so before but
was never sure..the photo today defintely showed it. Thought I would share it.
As I've said before I am comfortable with my spots.

However, I do believe the Vit has also caused my partial deafness - due to doctors
having no reason why I am - and having read that there is a possible link between
Vit & hearing loss.. Sure makes sense to me.
Also, my teeth are horrid. I think that's also to my vit. I can't prove it but
it sure seems to be possible. I've taken care of my teeth and yet
they are horrible.
So does anyone else out there have hearing or teeth problems along with their vit??

History Of Vitliligo

An interesting article about the history of vit. I had been curious myself about how cultures and religions had seen vit over time. Defintely worth the read. You can find the article at the below link.

History Article

Vit E-card

I came across this & wanted to share.It's aimed at all the companies
trying to get those of us with vit to try a new "cure" when in reality there is no cure.