No, I'm not a Hypochondriac nor am I over-exaggerating...

...but thanks for thinking that.

I know that there's no visible signs (most of the time) that I'm in pain or feeling really sick, but trust me when I say this...I HURT ALL THE TIME.  I FEEL LIKE I HAVE THE FLU OR JUST RAN A MARATHON EVERYDAY.  I wish that all of this was in my head.  I really do.  I wish I was making this up because I would give anything not to feel this way.

I have to neglect basic tasks sometimes just to make it.  No, I can't clean up my apartment.  I barely have the energy to clean my body.  No, I didn't cook.  I can't barely manage to stand that long.   If you think that I can work 8+ hours at a job and then come home and do normal household chores, you are mistaken.

I go from bed to work to bed.  That's my routine.  I manage to sing and dance and be merry while I'm not in bed...but I always pay for it at the end of the day.

My life is miserable enough with my body hating me so much.  I don't need the sideways glances and gossiping about me being sick.  I really don't.

It's amazing how little people know about illnesses.  You would think a systemic illness was as common as a unicorn.   The same thing that makes my stomach hurt just might be the same thing that makes my joints hurt.  Mind blowing?  Well, it shouldn't be.    You feel bad all over when you come down with the flu, right?  So it should be that hard to believe that my pains, rashes, and fatigue are all coming from the same place.   I don't like collecting symptoms anymore than you like hearing about them.

I don't like telling you about them, but sometimes I get really sad and frustrated, and I have to tell somebody.  I don't want your sympathy.  I just need to get it out.   And believe me when I tell you that I'm only telling you a small bit of what I'm going through.

I have to live my days knowing that there is something wrong with me, and it might be a  long time until they find out exactly what it is.  I know that there are millions of people just like me in this world that are suffering without ever getting a diagnosis.  Some of them die with no answers.   Dying doesn't really scare me much anymore.  But I'm scared shitless of having to live like this for the rest of my life.  

30 Thing about My Invisible Illness You May not Know

1. The illness I live with is:   still grossly undiagnosed, but i have a list...dysthymia, borderline personality disorder, ocd, non-specific esophageal motility disorder, gastric antral vascular ecstasia
2. I was diagnosed with it in the year:   psychological, 2001-04.  physical, 2009-10
3. But I had symptoms since:   as long as i can remember
4. The biggest adjustment I’ve had to make is:   realizing it's not all in my head and that i cannot do everything...sometimes you have to take a break
5.  Most people assume:   im a hypochondriac or just looking for attention...or that im exaggerating
6. The hardest part about mornings are:    getting out of bed...im usually tired and stiff
7. My favorite medical TV show is:  probably ER or Scrubs
8. A gadget I couldn’t live without is:  my cell...
9. The hardest part about nights are:  knowing that i'll have to do it all over again the next day
10. Each day I take __ pills & vitamins. (No comments, please)  varies, but i take around 15 total now
11. Regarding alternative treatments I:  have only looked into supplements...thinking about acupuncture though 
12. If I had to choose between an invisible illness or visible I would choose:  i'd choose the one that hurts less i guess...i dont know...
13. Regarding working and career:  i've been missing work and i never do that...it's hard to be bubbly and happy when you hurt
14. People would be surprised to know:  that i cry sometimes
15. The hardest thing to accept about my new reality has been:  life is very fragile and it's may not play out how you always imagined it would
16. Something I never thought I could do with my illness that I did was:  n/a...doctors are just now beginning to agree that somethings wrong...soooooooooo
17. The commercials about my illness:  they have ones for depression...they are depressing lol
18. Something I really miss doing since I was diagnosed is:  i havent really changed much since i dont have a definite dx right now
19. It was really hard to have to give up:  n/a
20. A new hobby I have taken up since my diagnosis is:  blogging more since im in bed more often 
21. If I could have one day of feeling normal again I would:  go running
22. My illness has taught me:  that people get really uncomfortable around sick people
23. Want to know a secret? One thing people say that gets under my skin is:  "oh, that's why you're so skinny!!"
24. But I love it when people:  actually take the time to understand what im going through and ask questions or google
25. My favorite motto, scripture, quote that gets me through tough times is:  Things will get better.  If they don't, oh well.    :-)
26. When someone is diagnosed I’d like to tell them:  welcome to the club
27. Something that has surprised me about living with an illness is:  people in the medical field can be real jerks
28. The nicest thing someone did for me when I wasn’t feeling well was:  ask me if i needed help
29. I’m involved with Invisible Illness Week because:  we are overlooked...especially if we are young.  nobody believes us.  nobody cares.  they think it can't be THAT bad since we don't look sick, but we suffer.  and im sure that many are like me, and they just stop saying how bad they feel.  we stop going to doctors when they dont believe us.  we stop believing ourselves.  that's no way to live.  we need a voice.
30. The fact that you read this list makes me feel:  happy because somebody actually came to my blog.  lmao

I'm a bitch.

If you know me, then this is really not a surprising statement.   I can't explain where this bitchiness comes from nor do I know when it will strike.   I don't always like it, but it is what it is.  I have to tell people not to take it personally.

But sometimes, I feel really bad about it.

On Friday, I was in super bitch mode.  I wasn't talking to hardly anybody.  I was snapping at people.  Hell, I was even flat out ignoring folks.   One poor soul tried talking to me and I ignored her every word.  She balled up a piece of paper and threw it on my desk at like 9am that morning.   I ignored it until about 6pm when I was about to leave work.   

When I unraveled it, my heart sank.  

So I taped it to the side of my printer and uploaded it to facebook and twitter.

I really do feel bad.   

A bitch needs therapy.  lol

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.