NEW INSTAGRAM & HEALTH UPDATE

Hii! I changed my instagram handle to VANDALISST
Link: instagram.com/vandalisst
         


To anyone who still wishes to contact me about cushing's disease or interested to see what's going on in my life or new selfies please look for my new instagram name vandalisst. I still get messages, comments and emails regarding Cushing's disease so do not hesitate to ask me any questions!


***And to update on my health and why I was feeling bad, my cortisol was a bit lower than average but also my thyroid is a bit low. I am not sure if all of that relates to why I was feeling terrible but I also know when I go too long without a period I feel horrible so I just pray I can have normal periods so I can feel 100% in the future.

Test Results & New Video Update!

Hi guys, I was bored surfing on youtube and clicked on my channel only to see that the Cushing's video views are up to 14k with many comments. It has really made me happy that people are watching, talking, connecting and raising awareness for Cushing's syndrome and disease. Thank you all the viewers, subscribers and for the shares on youtube. I feel a sense of connection from the community to one another and my goal is to make this illness a little more known out there. I wish I could get an already famous youtuber to just shout us out and so we can have a bigger amount of awareness.

It's easy to forget as time goes by. We get this illness and write blog about it but then once we recover we forget how hard it was and how rare it is.  I get that sometimes we just want to forget about what had happened and move on from our life and life begins to feel better so we don't really care to complain on blogs but you guys, please keep sharing your story to the world because you might just save one person's life for viewing your story. There has to be people who are proactive about awareness for every other disease for it to be well known so we need to do this for our Cushie family. Sorry if I sound all preachy but I really hurt when I get these emails of people who are going through the same thing I was a few years ago when the disease was in the early stages. Being misunderstood, misheard, ignored. I was reading a story of a celebrity who is depressed, gained alot of weight and can't lose it and I just wonder do they know about CD? Or I walk down the street and see a person with a moonface and buffalo hump and wonder if they know they are sick?

Fluctuating Test results. Not sure if it's improvement but hey better than having high cortisol!

Well I have some big Cushing's News coming up that I want to share in my next blog. It's still in the works. I am really excited about it! If you haven't already, please comment and keep the converstation going!! Here's my moon face again =]

My 2013 Video

Here's my updated 2014 video:

Cushing's Patients Story for MAY! Yay!

Happy May! So I have an idea that I want to start some new blog posts that are about experiences that others have had with Cushing's. I will still write occasionally about myself here and there but I want to start focusing about other topics. So get ready! If you want to share your story please email me at: yumnguyen07@yahoo.com or vannievan12@yahoo.com
You can be in any stage of this process or any kind of advice you would like to share. You can choose to be anonymous =]

I am honored to share the story of one of the first Cushie sisters I have talked to. She has been extremely helpful with my whole process and was an angel sent to me during my hard times. Here is our short interview.

(Click^ to view full picture) Our Cushie Sister's transformation

 ME: Wow you didn't look overweight or classic "textbook" Cushing's.

 Cushie Sister: Yeah, that's part of the reason the doctors didn't really believe.  But I was exercising like crazy and eating nothing.  I should have been super skinny. But, I do think it prevented me from getting obese. 

ME: What was your biggest obstacle looking back at that time before and during?

Cushie Sister: I guess the biggest obstacle while having Cushing's was knowing something was off but being told nothing was wrong.  I definitely felt like I was a crazy woman. 

After surgery, I was expecting to feel great right away and the insane tiredness was unexpected.  It was like a heavy, wet blanket on me for almost a year.  Also, I didn't like being dependent on the hydro (steroids), and had it in my head that if I weaned, I'd recover faster.  That's not actually true - it's actually detrimental.  You can't force your adrenal gland to wake up; it just takes time.

Now, I feel like the world is available to me and I am open to life.  It's the best feeling ever, so in some ways, I'm grateful for Cushing's for giving me new eyes to see it.

Me: any advice you can share to other viewers or patients?

Cushie Sister: as far as advice, I know it's the hardest thing, and I'm not sure that I could have done it but... I think it is important to separate yourself from the disease.  You have/had Cushing's but you, the person, are separate from the disease.  In some ways, I felt more important because I had Cushing's.  I needed the disease to feel special.  That was a mindset that was difficult to shake once I was well. 

There it is guys. Thank you for the informative advice and congratulations on your awesome progress!

I Want Perfection

I know I tend to repeat this subject but it is something of importance for me my whole life. I have battled self esteem problems and writing about it helps me move forward.As you guys already know, I have experienced bullying and fat shaming as a child. When I became a "tween" I made a promise to myself that I would not be that fat tomboy girl anymore. I would be the girl that people admired. I wanted to be the perfect skinny, beautiful girl with nice things. I wanted to be liked by everyone and popular in school. I wanted to be so perfect, that nobody could say or find anything wrong about me. So I went on a diet with my sister and I got down to a low weight. I felt perfect for a while but deep down I felt so much self hate and doubt. I felt like the most insecure girl. When I hungout with friends I would think about how skinny they were. They had better arms or a flatter stomach than me. I compared myself in the pictures with other girls and picked out a body part that I needed to work on. Why was this girl so perfect and likable and I am not? I assumed she was prettier so that was why.

I don't know how many diets I've tried throughout the years. My first time was when my aunts called me fat and told me I shouldn't eat the cake at Golden Corral. I went to the restroom and cried and threw up the food I ate. When green tea pills were trending to lose weight, I started taking the pills. I remember trying to take metabolife and I think they had lawsuits and stopped producing those lol. I took a subway footlong and cut it into four pieces and ate a piece every few hours and nothing else. I worked out 4 hours a day at the gym then came home and did workout videos. I've tried every herbal remedy and diet teas out there to lose weight. I remember at my thinnest, I still felt huge even though people said my weight was too low. My weight would yo yo and I just couldn't stop fixating on my flaws. I would say I was obsessed with my looks. I was vain but I couldn't stop myself I was addicted to finding my flaws and trying to fix it. My hair was too wavy, frizzy, I had hairy arms, my belly was too big, I had pimples, I am too tall (yes LOL I am only 5'4) etc.. I had trouble embracing my looks and I had no idea what inner beauty was. I had no sense of self or morals. I just wanted to look perfect on the outside. I didn't feel like I was ever smart enough but I knew I looked pretty decent. What needed improvement was my mentality and self worth.

Pre Cushing's at my thinnest. I felt like a fat girl trapped in a small body.

Being sick with Cushing's pushed me to the edge. I had so much self worth in my looks that I was nothing without it. I hated myself for how I looked. I couldn't look at myself in the mirror without bursting into tears. I blamed myself for getting sick because I was so vain all these years and I deserved all that was happening to me. People talked about my looks and I thought this was the worst thing I have been afraid of my whole life. When I was diagnosed with Cushing's I accepted that this was what it is. I began to stop fighting myself and finding inner acceptance. My security blanket was gone and I was forced to face my fear. Sure some days were easier than others. But I took a real hard look into myself to find something good about me. I realized one of my biggest fears happened. I was fat, hairy and pimply. And got called out for it. But I was still alive. I accepted it all. I still had people around me at my worst. I had support. Still I was ashamed at times for what I looked like. But now I see that what I was doing before was all wrong. I am so thankful for this to have happened to me for me to finally realize my self worth. And I am thank ful that I have never felt more perfect now than ever. As the layers of shame, fat, acne started to melt away, I am left with just me. I still have my days where I feel not smart enough or prettiest but I am okay with that. I would rather radiate inner beauty any day than be the prettiest girl in the room who is vapid, vain, and conceited. Because looks will fade but not my inner true self. Much love you guys! Let's all have cake and enjoy ourselves =] Here's some progress pics. My next post will be about my eating habit and lifestyle during recovery.

RECOVERY 11 Months