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:

My Feature Story On Cushing's Support and Research Foundation

I will frame this!

So I received my spring Cushing's support and research foundation (csrf) in the mail. I was so excited to read it. Inside has a lot of interesting new research on the disease and doctors answers for questions people want to know about Cushings. I thought I knew all about it through my own research and experience but it had alot of answers and information I did not know. It also talks about cyclical cushing's which is harder to diagnose and alot of people have been emailing me about why they have all the symptoms and features of cushing's but their test are never positive. So I think that we always have to prepare for other possibilities. I am not a doctor to say whether you have it or not but I do encourage anyone to find a professional to investigate to why they aren't feeling "normal". Also the newsletter features patients stories.

Well I read this newsletter a few times and not once did I realize my story was featured inside the newsletter until a cushie emailed me saying they saw my story! Wow, I feel so honored to be chosen to share my story to csrf readers. My feature page was stuck together so I had no idea it existed but thank you Benji for informing me! I hope you are feeling better these days. I want to thank CSRF, cushies, and supporters. To help me through hard times and to share my story for awareness. You guys are everything.

Stress is not the cause of Cushing's. Having Cushing's causes stress.
 But it sure will feel worse if you're in a stressful situation!

Most Cushies suffer from bad memory, I still do.

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!

Happy One Year Anniversary

Wow it's been a year since my adrenalectomy woohoo! Must celebrate! Honestly I've been feeling a little paranoid about Cushing's. I don't know why but in my head I feel like my face is getting a little bigger.. I've been bloated and for some reason I feel fatigued and my joints are aching. I still get headaches and faint often. My MRI confirmed nothing but low blood flow. So I hope maybe I can start weaning off the steroids I am taking. Overall I do feel much better. I have a greater sense of self.  my moods have been happy often. I don't feel like laying in bed crying anymore. The paranoia has disappeared and anxiety. I don't feel awkward anymore and of course the physical change still amazes me. I hope that by the time my hormones regulate and and fully wean off steroids I can feel 100% like myself. I want to thank everyone throughout my whole process and for reading my crazy whiney rants at times. Thank you for accepting me sick or healthy. Remember that this is a long process and that you will get back to yourself and even better. Much love. XOXO

Happy New Year! Happy New You! and My Instagram!

Destroy What Destroys You.
 

Just posting a quick motivational photo for the new years. Recovery journey is starting to take a big turn and  it feels real good to me. I want to do a post about my experience of falling out of depression, so probably next blog will be about that. And no it's not because of the physical changes that is making me happier.... It's mentally too. It's amazing how things can change when I've felt so stuck in a rut for many years. Anyways I'll save all of that for next post!

Any who so I joined two social networking! One is called "Experience Project"-- if you feel depressed, like you need someone to talk to and nobody is there for you, go join this website! You can find people who are going through similar things that you are going through and seek advice.. Or just to talk to. NO HATERS ALLOWED! So try it out!! and I also joined Instagram. Sure I don't have many followers but I just wanted to have a place where I can post up some motivational stuff and progress pictures! I already have some Cushie friends that are seeking advice and seeing the progress of other fellow Cushies... If you have an account for either social networking sites, join us & add me!! See you in 2014!

INSTAGRAM: MEOMEEOOW
ExperienceProject: Yoshigirl12

Sexy Pictures of My Test Results!

Haha jk about the sexy part. Some people like to post sexy "selfies" but I will post bloody test results! Hey, I put hearts to make it sexier lol <3 The blood test results are in and drumroll..... 

 

^^Lol nothing much to see here but last month I was .03 So that is something? Unless it's just residual medication I took the other day prior to drawing blood. Hope not. I was at .03 three months ago.. I get nervous before bloodtests not because of needles but I still feel iffy these days so if my adrenal gland was to normalize I would be dissapointed that "iffy" would be the new normal I have to live with.. But the test confirms the iffy feelings. Still long ways to go. I am feeling better than before so let's keep rolling with the good times & improving. Still got my patience socks on. If that is the only thing I learned from Cushing's then it would be a good lesson of patience. Yeah, for those who have experienced major illness ya'll know that getting sick is only the beginning. Now there are other concerns that are raising up. The doctors told me this would be expected to find underlying problems after since Cushing's masked alot of underlying problems with itself. For example my allergies came back. But that's the least of my worries. Sounds like a sad broken record but I'm sharing my truth and that's what's up.

The dizzy spells are still here. I feel light headed and numbness on my chest and face often. It's worse when I'm hungry or tired. My PCP told me my white blood count (WBC) is low so we are going to investigate.. Health is a tricky little equation..

 
I went to vacation last week and I could not be as active and snorkel or walk too much. But it was still a great winter escape nonetheless. Wish I could stay there forever! I'll post up some pictures next time but I'll preview a real sexy picture down here. =]

Sexy Paradise eh?

My Picture Timeline on Youtube

Hello! I decided it's time to put up some pictures of my progress.. I want to talk more about Cushing's, my experience, and support through videos but I'm a bit still shy so I decided to make a slideshow instead... I'm not a pro and some of the captions don't show up idk how to fix it loll I'm a newb but here it is:

Please share this video!

Hello Bones!

I know that the word bone sounds kinda morbid but I have to share the delight I have found these past few weeks of improvement. The other day I looked in the mirror and saw my collar bones again! It's crazy that during Cushing's I had no kind of collar bone, spine, cheek bones etc... But now all of those bones are visible again. I am starting to have a normal shape back. Yes, it is still very slow but I can no longer deny that I am improving. My tummy is getting so flat and my butt is getting rounder and I have not diet or exercised since the surgery! I have lost 5 lbs somehow. Trust me when I say I have been snacking on junk lately. Carbs, sweets, fried foods, the whole shebang. My appetite has suppressed a lot but I can eat more and not feel that weird panicky feeling. The other day my family members commented on how different I am starting to look since the surgery. My eyes look more awake and my lips are getting plumper lol and my chin is more visible. Idk how to explain all of these changes. Maybe it's no more water retention? Hormones balancing out? It's funny how when I was sick I dieted and exercised like crazy and nothing really happened. Last year I did insanity workouts and ate lettuce for 3 months I lost around 5 lbs but I gained it all back within a few weeks it was so strange, then after that I tried to continue working out and eating healthy but the inches and pounds kept adding up. Nothing I could really do about it. I remember I looked in the mirror and did not recognize myself but now I am starting to see a glimpse of myself again. I later just gave into the Cushing's instead of fighting it because I was so exhausted about all the worries and needed a break.

I am still super tired but that is fine with me. I'll just continue to rest until I physically and mentally feel better. The other day two of my incisions got infected and was leaking pus it was gross and painful but I cleaned it and noticed the stitch threads were poking out so I pulled them out.. It hurt like a b***** but my surgeon directed that I keep an eye out if it worsens. My skin is improving more also but that definitely takes time since I am slow healing. Still get weird bruises and scratches out of no where and tried to start exercising but bones still hurt. I still get the fatigue and moments of feeling crappy but it is not an all day thing now. Still have not gotten aunt flo. The docs prescribed me some bcp but I tried taking them and felt like dying so I stopped. I guess I'll continue to have to wait it out some more. I should do a whole body pic before & after but I don't have anyone to take the shot so I'll just post up pics of my collar bones!


w/Cushing's syndrome/ no visible bones

Collar bones yay!