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.

Pre Cancer? The Dogs Know...

Greetings From Mt. Bonell Austin Tx!

Hello to all who still keep up with my health/cushing's blog and to the new cushies who stop by to read more about my personal Cushing's journey (remember to read more about Cushing's Syndrome in my 2013-2014 archive).
 So another update on my health. I am so far feeling good. No more Cushing's related symptoms. Not even that much anxiety, depression. The insomnia has improved so much and I can pretty much sleep anytime I want. My weight has been fluctuating again, which causes me to worry. I recently gained 8lbs in the time frame of 2 months, though I still look the same size, the weight gain scares me. ( the paranoia never goes away) I have been weight training and lifting like crazy and taking protein so maybe that is the reason why I am gaining weight-- hopefully it's muscle gains!! Some days my face look a little rounder/moon face-y and it freaks me out but I have realized that I am very sensitive to sodium and sugar. So If I eat too much of those two.. I get pretty swollen and bloated all over. So water is definitely very important to flushing all the toxins out and keeps the bloat away.

So far Everything is going fine in my life. Things are feeling like they are coming together and I enjoy every moment of my life.  The last entry I wrote was to investigate more about my abnormal menstrual cycle. After surgery I got my period around a year later and it came every month and I was thrilled but then since this year it stopped and started coming every 3 months or so and I noticed a little bit of breakouts, moodiness, bloating and hirsutism come back Basically PCOS symptoms. So I went to see the doctor. She gave me a pap smear and when the results came back, they found abnormal cells. My doc was a bit concerned so she sent me to the Ob Gyn and had her check me out. They decided to take a biopsy of my cervix and so we went ahead and did that. When the results came back, it turned out that I have type 1 Dysplasia which is a mild case of abnormal cells in the cervix. There are 3 types. Luckily I was not at a severe case and so they did not have to surgically remove the cells in me. With type 1, it can go away by itself or it can progress to type 2 or 3(precancer). It generally shows up when the immune system is lowered (maybe due to my cushing's or adrenal insufficiency) but  could get better with healthy lifestyle choices. There is still a small chance of it developing to something more severe so I will always need to go get a pap/ biopsy every 6 months to make sure it is managed. But getting minor surgery to remove some cells is no where near the debilitating experience I had with Cushing's. at this point, I am no longer afraid of what else is to come of my health/life. I am grateful that I can enjoy my life so much more with very little symptoms.

So I hope you guys are doing well and still feel free to reach out to me on my email yumnguyen07@yahoo.com please note that I will only respond to real patients with valid questions. I have been getting a lot of fake people reaching out pretending to be sick and that makes me so angry..being sick is not something to lie about, it is just unfair to others who are seeking help, support, and information.

I want to share with some pics of our first road trip with my two dogs. I mentioned some time ago that one of my dogs (Van-key the corgi/jack russell mix) is getting older and he has diabetes insipidus so I want to spend more time with him since he was one of my main supporters during my illness always lending me his little body for comfort. So I want for him to explore more in his puppy doggy life. It was just an amazing trip to Austin and the dogs enjoyed it so much. Austin is a city very open to pets everywhere and you get to meet all kinds of animals every where you go. Vankey was so happy and took in the whole experience-- even kayaking! which makes me so happy I can't wait to take him back in a few months!

Austin Here we come!

"Why you do this to me mommy?" -Vankey

Rascal looking Handsome in his life jacket

"What are you looking at?" -Rascal

Captain Corgi-Jack

Vanks navigating us

Feeling wayyy more confident post steroids!

The boys enjoying @Amy's Ice cream

Rascal enjoying Buttercream Icecream  (ps. Amy's icecream

is dog friendly!)

All tucked in @ our 5 paw hotel

The kings in their Queen size bed

Taking over the State Capitol!

Enjoying Mt. Bonell

A wedding on the peaks of Mt. Bonell!

This acrobat

Taking in the views at the top of the graffiti wall

Thanks for stopping by!!! Bye now!

Update Fully Tapered Off Steroids (PICS) and MORE!

Hi guys! I apologize for not updating in so long but don't worry I am still very active in responding to my emails, youtube(onedelicateheart), and instagram(1delicateheart). Ever since coming back from the New Jersey trip I have gotten so many emails and messages from Cushies and people who are in the diagnosing process.  So feel free to contact me from those various social medias. Best way to get a quick response is to email me at yumnguyen07@yahoo.com
 If you guys haven't checked out Rachel and Rae's website cushingstories.com then you better go and check it out now. I am so proud of these ladies for doing so a huge thing for our cushie community. There are stories, contacts, and videos for you to learn more about. Please share <3


So I have big news! I have fully weaned of steroids for 3 weeks! My doctor told me that my left adrenal gland has woken up. It is functioning at a low level so my adrenal gland is not producing like the normal average person but my body has adapted to the low levels so I decided to quickly taper off the rest of the hydrocortisone (Cortef) because let's face it, it is a pain in the ass to take and still felt bloated from small amounts! Well, how am I feeling? I feel almost perfect. Like I am 97% there. There are times I notice the change in energy and feel great then sometimes I feel lethargic and faint due to the fact that I have used up the little amount of cortisol reserve that I produce but nothing that I have not already been through and it is bearable. I still get very faint often but I think I need to start eating a diet that supports the hypoglycemia issue. And of course how do I look? Well here are some photos for you guys to see =]

 These pictures are all post op and recovery. and no I did not get facial surgery during recovery, it's just really good makeup tricks I started learning that I want to share to you all soon! But now Here is the breakdown of my recovery. This is not the most organized list sorry! lol

6 Month Post OP: moon face was shrinking, acne growth stalled, skin got a bit drier, still bloated, face still felt heavy (hard to smile or open eyes wide), droopy skin, reddish orange skin, no hair growth, depression, anxiety, nausea, hello collarbones! dry eyes, adrenal insuffiency was at it's worse due to tapering. high bp but pre diabetes was gone. Sleeping all the time. Lazy, no motivation. panic attacks. Crying all the damn time.

10 Month: Face continued to shrink, features feminizing (eyes and lips look more pretty??), smiling is easier but still felt like cheeks were heavy, acne fully stopped, skin healing, hair growth (baby hair halo) not so healthy looking though crinkly hair texture, period was back (still irregular), buffalo hump shrinking, itchy dry skin to the point I can't sleep, body adapting to adrenal insuffiency, acne scars, less depressed, up and down emotions and mood, nausea, faint, period still irregular. Insomnia. undereye bags circles. Panic feelings, no attacks.

12 Month: I have to say I felt much happier after a year since the surgery, My face is almost back to normal, features are slowly defining, smiling is easy, hair is starting to regrow fuller but texture is still crinkly, no more acne problems, super duper dry skin, less crying, less stressed, I notice myself being funny and enjoying life like never before, began socializing again, face dimple is starting to show, jawline, cheekbones and nose looking slimmer. less nausea, Less paranoid. Insomnia. Doing normal activities. Shopping addiction due to weight loss and increased confidence LOL

14 Month: period came back regularly (feeling prettier after every menstrual cycle), skin is glowing, reddish orange skin fading, acne scars healing, less hair fall, wondering if this was as good as it gets??, face features more defined. fainting, low bp, dizzy, Mood is pretty stable but I still will get cranky when I being weaning off more steroids, more confident, no more sadness and resentment in my heart.. I literally woke up one day feeling like all the bad stuff and people in the past did not affect me anymore. Truly a miracle. Is this it? Will it get better? Sleep is up and down.

16 Months: face is back to normal, dimple is fully visible, jawline is chiseled, sleeping more, period is irregular again (due to low amount of steroids?), hair is healthier and shinier better texture, acne scars are less visible, night sweats, fainting, dizzy, extreme low bp (good thing? idk), satisfied with how i look but still worried if I still would have the highs and lows of moods and dizziness.

18 Month (fully off steroids): Face got even smaller less bloated (yeah I didn't know that was possible), I can now even smile with my teeth effortlessly, skin fully healed, scars are not as visible, I feel confident enough to go makeup free while running errands, people complimenting me, strangers think I am younger than my age, my mom says I look like I did back as a senior in Highschool! Thanks mom. Still faint and dizzy, no more obsessive thoughts, no more paranoia, no more guilt, anxiety, or shame, no more negative feelings. Mind is at peace, skin still dry, period still irregular but still coming, facial features look lifted, eyes are brighter, eyes are less dry, feeling motivated, not afraid of speaking my mind. No more panic attacks! Still food sensitive. No more waking up at 9am to take Cortef yay!

My body Recovered:
Less joint pains, muscles are starting to look more defined with little exercise around month 9 post op, no dieting, appetite is normal. No more feelings of being ravenous with food, body is getting a more feminine curvier shape, fat is relocating to where it should be instead of on my stomach, buffalo hump gone. I can feel my spine, collar bones, less body and facial hair, more hair on head lol... no more orange hands, still food sensitive to salt, sugar, and MSG. Can drink coffee without panic attacks. Can lightly workout and lift light weights with less muscle pain. Still cannot run or do any hardcore exercise training (not that I ever want to again). more flexible. no more bloating in weird places. More active. Feet shrank 1 size down (size 7 to 6-5.5), no more rapid hearbeats. Feels like I can breathe again. The heavy brick feeling on my chest is gone yay! Digestion is greatly improved.

That is all I can think of right now. I am thrilled that my future is filled with more optimism. I am glad that majority of the stuff is reversible. I am still stuck with a few minor health nuisances that Cushing's affected. I really don't think it is going to ever get me down because everything that I prayed for I have been given by God and the Universe. This whole experience really shaped me to become who I am now. I am stronger and humbled than I was ever before getting sick. I am glad that I got to meet so many people and understand the struggle of getting everything taken away from me. I learned the lesson of compassion, patience, and gratitude.  I will continue to advocate for Cushing's and rare diseases. So I will always come back to blog and update my life. I also want to be more active on my youtube channel and posts some videos of me talking about various Cushie subjects and giving advice to Cushie patients and also post my beauty tips and tricks and also my health regimen. I just need to get over my fear of talking to a video camera lol. Thank you guys for reading this post and supporting me through this journey. I will never forget. Much love!

Before and After

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Body Progress Pic Update

^Bloated, I couldn't suck in my stomach lol

I've been kinda in a funky mood feeling extremely weak and dizzy. Yesterday I halfway blacked out. I started seeing grey and tingles then I fell in the hallway. So I greyed out lol.. It usually happens when I stand up too quickly. I feel  numb on my face & chest like I am not getting enough air in my lungs. which makes the anxious feelings worse. And the low energy feeling lasts all day. To get my mind off it, I took some pictures to remind me I AM getting better. And I want to share it here. The other day the nurse weighed me and the scale said 112lbs. I couldn't believe her I made her weigh me again. And I haven't been that low since highschool. I think even then I was 115lbs. So great my body doesn't hate me anymore! The weird thing is that my height was 5'3 but I use to be 5'5, before surgery I measured 5'4 - how did I lose 2inches???  I'm posting up some pictures with Cushing's and 6 months after Adrenalectomy. And the last one is a few days after surgery. The scars are healing nicely. So far I have lost maybe 2 or 3 lbs every month to a total of 17lbs! And what is my secret? Getting a Cushing's tumor removal! Lol I have barely exercised, or changed my diet, I do eat smaller portions because if I stuff myself I feel sick... Every time I try to run it is too painful & nauseous. And I am constantly craving sweets and carbs these days. I guess that is what low sugar and adrenal Insuffiency will do to you-- give mad cravings but still lose weight. I just walk for like 30 mins a day... But I am very inactive compared to before. So it is just a joy to see progress!