National Invisible Chronic Illness Week

September 13-19, 2010 is National Invisible Chronic Illness Awareness Week. This annual event, started in 2002 by Lisa Copen, features a variety of ways to get involved including a virtual conference September 13-17 online for free with speakers each morning 10:30 – 12 USA Pacific time.

There is a Meme “30 Things You May Not Know About My Invisible Illness”, you can sign up to blog for the cause, read guest bloggers’ posts, and get involved in the campaign on Facebook. There is even a free 80-page ebook when you sign up for email updates, with 263 tips!

With nearly 1 in 2 people living with a chronic condition, about 96% of those people are suffering silently with invisible illnesses. See InvisibleIllnessWeek.com

So they say beauty is only skin deep

Well, I want that outside to be as beautiful as possible.   I go through periods of having near flawless skin...then my face will suddenly explode and be covered with blackhead, white heads, pimples, and what looks like cystic acne.

Why does this happen?   Hell if I know.  I'm sure it's hormonal though.  There's really no telling with the way my body likes to act.

Well, after being in love with my skin for months (and not changing anything about my routine), I found myself staring at a face that was laden with bumps and hyperpigmentation.   WHA HAPPEN?!

I don 't know why this happened, but I'll be damned if I let this go on.

I eat rather well, so I didn't or won't be changing anything about my diet.  
I do take supplements.  MSM, flax, fish, & borage oil, spirulina, and Vitamin D3.  
I drink water and green tea.

Now for my actual skin regimen, I had to change up some things.

I've used  raw african black soap for years to clean my face.  I still use that, but now, I only use it in the mornings.  Afterwards, I use St. Ives Naturally Clear Green Tea oil-free Scrub.  It's pretty gentle and has salicyclic acid.  I follow that up with blotting my face with a white towel and spritzing on pure aloe vera juice.   From there, I apply my primer and foundation, etc.
When I get home from work, I use makeup removing cloths to take off my makeup.   There's two that I like:   CVS Brand  which is a knock-off of the Pond's Clean Sweep (I've used both and they work equally well) and the Target Up & Up Brand ones.
Lastly, before I get into the shower, I apply castor oil mixed with a tiny amount of tea tree oil to my face.  I massage it in really well, then I get into the shower.    Some people like to put a hot towel on their face until it gets cool, wipe, and repeat.  But I'm lazy, and I don't really like showering anyway, so I rely a lot on the steam of the shower.  I do run a white towel under hot water and wipe my face with it a few times though.
When I get out of the shower, I spritz my face with a mix of water and apple cider vinegar.  When it dries, I rub a tiny amount of shea butter between my hands and apply it to my face.

I'm not lying to you when I say that I saw an almost immediate improvement when I added the h2o + acv step.    I have a few blackheads and whiteheads, but nothing major right now.   I'm just waiting on all these spots to fade.   And don't say not to pick because I get hyperpigmentation from everything.   The skin doesn't even have to be broken.  :-(

I would post before and after pics.  But no.  lol    You'll just have to take my word for it.

It's Game Day.

GEAUX TIGERS!  

LSU vs. North Carolina

7pm

ABC 

I'm sick and tired of being sick and tired.

Literally.

I've been quite sickly for the past five years...progressively so, but as far as anybody had been able to tell me, I was perfectly healthy and as the jerk doctor told me last year, "it won't kill you."

Well, that's not entirely true.   Thanks for talking out of your ass though.

On the 17th, I had an upper endoscopy done and I expected to wake up and get a diagnosis...maybe have a dilation done and get some meds, and just live with a condition that I would have to monitor for the rest of my life.    Well, i woke up and had my world turned upside down.   I'm being a bit dramatic, but it was pretty devastating.

One thing you don't want is to wake up and have the doctor looking at you with a look of complete confusion and worry on his face.  I might have imagined all of that, but he was pretty confused.

What did he find, you ask?

Where do I begin...

Candida esophagitis...and I mean extensive infection.   The lower part of my esophagus was completely covered with yeast.  (I know this because they took pics and printed them out on the discharge papers.  cool, huh?)   This is usually found in immuno-compromised people, or people with achalasia, scleroderma, or sjogren's syndrome...basically people who are prone to infections because of low immunity or people who have esophageal motility issues.

Next, there were the numerous gastric and duodenal ulcers.  

Then, severe gastritis.

After that?    Not only did I have a condition called gastric antral vascular ecstasia (GAVE), or watermelon stomach, but my villi were flattened.   WHAT IN THE HELL IS GOING ON?!

Watermelon stomach is usually always only seen in people with scleroderma (and sometimes other autoimmune diseases) and chronic renal failure.  Flat villi?  Yeah, very Celiac like...

Oh, but wait...my biopsies that were taken during the procedure were normal.   aaaahhhhhhhhahahahaha

WTF is going on?   No.  Really?

I'm waiting on the results from all the blood tests ordered after they found all this foolishness.   I am baffled.  

But this explains all the pain I've been in for the past few months.

I spend my days now taking medicines.     And right now, I'm only on three because no one knows what's going on so they are only treating symptoms.

It's so scary though because watermelon stomach is usually a cause of GI bleeding and anemia.  A lot of people have to get transfusions and take iron injections.   I could have starting bleeding at any time.  If I didn't have the sense to leave that loser of a doctor that wasn't treating me, I might have would never have seen another specialist.

And it's nice to know that I keep losing weight because my body is starving because it probably cannot absorb any nutrients due to my villi being flat.  ugh.

I love it when people...fat people...call me skinny and say they are envious...fuck you.  How about that?  Fuck you.  

aaaaaaaaaaand before I forget...Propofol?   yeah,  it's pretty damn nice.  way better than demerol + versed cocktail.    Shit works fast and you recover way faster.    I'm a fan.

Let's Straighten It Out

I straightened for the third time since being natural last week.   I used a heat protectant before blowdrying and before flat ironing.

Ends didnt get super straight.  Hair was fluffy and too light as usual.   Oiling during the week did not help.

Yeah, I snap pics at work when I'm supposed to be peeing.   And what?

This bun was creating using the spin pins.  yay.

I don't know why this is so blurry, but I was almost convinced that my hair was shorter and now only BSL.

I think I might be suffering from hair anorexia.

At any rate, I'm still on track to make WL by year's end.

Chicks on hairboards will have you hype to try something.   I was like ooohh...let's do a braid out.    It'll be cute!


yeah, no.

My hair is stubborn sometimes.  There are times that it would hold any type of set.

This was one of those times.

  

It's okay though.   I threw that mess in a side bun and went on my way.   

So I'm going to act like I've been blogging this whole time

As much as I have to say on a daily basis, I can't seem to put it here.  

I'm trying to remember what all has happened.   A doctor divorced me, and I remarried the same day.    I quit my ADDerall...and I accidentally spilled some oil in the gulf.   One of those things miiiiiiiight not be true.   I mean, I was never married to a doctor.

So, Dr. James Patrick Herrington, gastroenterologist in Lafayette, Louisiana @ Acadiana Gastroenterology Associates, had the audacity to have his nurse call me to say I needed to find another doctor because they weren't in the business of referring patients.    

What lead to this, you might ask...well, after a while, a person living with a chronic, painful and at times, debilitating, disorder gets pretty damn irritated when they aren't being giving the highest level of care available.    This man had been seeing me since Spring of 2009, and has yet to treat me for my condition...he actually refused treatment several times.

This same man called me last summer and told me that there was nothing he could do for me.  Later, he told me that maybe my condition would go away.   Now, someone please tell me why this moron would be opposed to referring me to another specialist?   His small brained nurse said that he didn't understand why I would want to see a neurologist (keep in mind, this mystery condition of mine is usually caused by some type of nerve damage or degeneration).  

The bitch was getting on my nerves on the phone, so I hung up in her face after I asked why he couldn't at least send me to another gastroenterologist that could actually do their job.

I was highly upset, but ended up getting an appointment at another clinic right later that day.    That appointment went beautifully, as I expected it would.   I had talked to two people at my job who also go there.   The doctor was out, and I met with the nurse practitioner, and she was a doll.   She took all the copies of my records that I brought.   She actually went through that damn symptom history sheet that a lot of places make you fill out.    The visit was over an hour long, and by the end of it, she was excited by my case because it was mysterious and intriguing.  She assured me that the doctor would be too since he likes those types of things.  

I'm scheduled for another upper endoscopy (yay :-/) in which I will be totally sedated with Propofol this time. I hope Conrad Murray is off that day.  *rimshot*

*crickets*

I'm hopeful at this point.   Maybe one day soon, I'll be able to swallow and have food go into my stomach without being in pain or choking...or needing to force it down with water that ends up choking me too...or hell, without it playing red light, green light on it's way down.    oooh....or maybe I'll stop waking up coughing or maybe this constant gurgling and pressure will go away.

Or shit, maybe I'll have someone that will at least TRY to treat my symptoms instead of putting me on expensive meds that do not work at all.

So fuck you James Herrington and your shitty practice.   May your esophagus stop functioning and cause you years of pain and sadness.    woooo saaaahhh

In other news, I stopped taking my adderall.  When?   I have no idea...that's kinda a result of not taking it anymore lol...

So needless to say, I've been wide ass open at work for the past week or two.    YAY!  
Adderall worked wonderfully and I miss it, but until all this other stuff going on with me is figured out, I'm going to say au revoir to it.

I love how people think I was so quiet because I was taking it.   I'm usually quiet because I'm disgusted by the ignorance that surrounds me.  

And speaking of ignorance, straightening my hair tends to bring a lot of it.  

I don't give two shits about how much you like my hair when it's straight.   You think I should keep it that way?  That's nice.  How about you go play in traffic.  

I'm going to start going up to people and tell them I like/would like something about them if it was the exact opposite of how it naturally is.

"Hey, Mary,  I wish you were skinny instead of fat."

"Linda, girl, I like it better when your skin is paler in the winter."

ugh.

I hate people more and more everyday.

Well, lo and behold, the spin pin works!

For a couple of months, I've been reading about the Goody Spin Pin.  I saw pictures of this thing, and I was veeeeeeeeery skeptical that it worked.    I never got the chance to try it because I could never find it anywhere...can't say that I really looked either though.

Okay, so while at CVS trying to use my extra bucks and coupons, I saw a pack.   They were blonde, but I bought them anyway.   At $6.49 a pack, I was pretty sure I would MAKE them work.   

So since I'm like a little kid, I ended up taking my two braids out in the truck, and trying it.   Can you believe those things worked?!    

I came home, took my hair down, and made a bun.

Pretty cool huh?    

My hair felt very secure.  I can't wait to use it every single day because I don't ever comb my hair.    :-)