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.

Health Update

Hi guys, it's been a while. Well it's a bit late over here but I thought about blogging so this will be just a quick update with what's going on with my health. So far I feel pretty good most days. I still do have some days where I feel extremely tired and the anxiety/depression comes back. But I really believe those changes connect with my menstrual cycle. I notice before my period I feel super PMS-y and tired to the point I want to stay in bed all week. I still feel that around that time my ache, pains, and moods are magnified. Also they get worse when I have a late period, like something building up that needs to be released -__-  Last month I finally got a visit from AF after 3 months and the week before AF came was terrible. I had bad cramps and cried at everything. Then after the period, I was back to feeling good again. Now I am 2 weeks late and I start to feel the bloating and mood swings come slowly. So I do believe alot of my bad days are due to my hormone fluctuations. I have a OB GYN appointment coming up so I will talk to the doctor about what is going on with my period and how terrible I feel during the times I miss my period. So now I think that PCOS is still a problem I need to figure out the cause of it.

Other than that I feel much better than how I felt this time last year. I still take 3mg of cortef because I am still slightly adrenal insufficient and I feel better when I take a little bit of hydrocortisone. Hmm.. My weight has stayed at around 112-115 lbs and I basically still eat what I want but I do want to start getting in a healthier lifestyle because my body is not as resilient as it use to be and I will feel terrible after eating unhealthy foods. I also still can't do anything too strenuous because I have the low blood sugar/pressure that I need to control. I really want to feel healthy all the time so I think I need to take care of my body more. I also have been trying to live in the moment and feed my brain good thoughts to avoid falling down the slippery slope of depression. The past few months I've been busy with school/training, and my family. Keeping busy helps to not think about the stuff I want to change about my life/self. I am trying to just focus on the positives in life. Well that's about it! BTW I am always still on my email and social media to answer any Cushing's or health related stuff.

My handy kitty period tracker!

Here are some pics from the 9 year anniversary with my boyfriend. We decided on San Francisco, CA and it was beautiful, cold and windy!

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!

You Deserve the BEST Healthcare! & Why I Avoid Doctors & Clown Life

Hi guys, I just want to say sorry for the intense entry last post. I am still in the stages of Recovery and if any Cushie could tell you, it is quite the roller coaster of emotions. And It was the last thing I expected from a friend during my recovery to do but that's life. I remember reading somewhere about a story about how ducks tend to flap their wings a few times after a stressful event or even a a fight to release their stress out of their system then they move on. Well I guess writing is my way of flapping my wings to let the stress out of my system. LOL anyways, I wanted to talk about getting the most out of your healthcare.

It seems as this is a very common problem that patients face. We go to see a doctor for a symptom and somehow we get rushed out of the docs office realizing we forgot to tell them the most important thing and the tests we wanted
them to order or the medications you were interested in. And then sometimes we just get ignored by the doctor because we don't "look sick" enough. When I first noticed symptoms of irregular periods and hairloss, I went to see a doctor. I told her I was worried about my period and the doctor gave me a pap smear. She then told me everything down there looked normal so I would be okay. She then looked at my hair and gave me a look like I was crazy and told me there was nothing abnormal about my looks and sent me home. In a way I felt like doctor knows best but I couldn't help feeling that she could have done more for me as a doctor and I had much more questions that went unanswered as a patient. So a few months later I went to see another doctor. This time I wrote down all of my symptoms and how long they have been persisting. I then hand the list to my new doc. The doctor then tells me I looked like a healthy young lady and even though I am gaining a little weight, I was still small in the doctors opinion. They then talked to me about birth control pills that would help regulate my menses and maybe help with the hormonal symptoms. I knew that BCP was not what I wanted and that I wanted to figure out what was causing the symptoms rather than masking it. But at the time I was too timid to ask these doctors since they are the expert and the are so fast paced that it was hard to get a word in. So I left feeling like I just wasted more time and co pay for nothing. So, I took their word for it. I guess I was healthy but little did I know. I was very sick.

Having these bad experiences at the doctors seemed to repel me from going to get my annual checkups. I made every excuse not to have to go see a doctor. They will just ignore me, they will just waste both our time, my money, and I will get prescribed things I don't want or need to take. So it took years later when I finally gave up and saw an Endocrinologist. A very expensive one I might add. I thought I was young and healthy and did not need health insurance.. Boy was I wrong about that one too. Well the month leading up to seeing my endo, I made another list of symptoms. This list was a very long one. I felt as if I was making these things up in my head as I was writing them down because it just seemed so dramatic. My list included: sad feelings, crying spells, rollercoaster mood changes, fat cheeks, no periods, belly fat, bloating, acne, hairy face and arms :( tired, joint pains, red face, orange hands, no bowel movement, hunger, weight gain, darkness on my neck oh yeah and armpits! and many more :( It just seemed like a list of symptoms for a sad clown but yes it was all real and all mine. Well I handed the list to my endo and he gave me the eyebrow and stared into my soul. It can also be very distracting that he was the most handsome Doctor I have ever met. And so he looked at me and started typing down all of my symptoms into his computer. Again, I felt the sense of being ignored. He then asks, " you ever heard of PCOS? Ever thought about BCP? I said no, But I am sure I don't have PCOS. I then tell him that I wanted to get to the root of my problem. He then gave me another high brow stare and said he'll do everything he can to figure out what is troubling me. I felt like I hit the jackpot. He then ordered every test under the sun and a few months later he weeded out the high cortisol as the source of concern. I had to take many dexamethasone tests maybe 4 times, then we moved on to 24 hour urinary analysis, saliva, and more blood tests. Everytime the results were positive but he kept making me repeat these tests. At one point I remember I felt like I was hitting a wall and all these tests were wasteful and pointless. I felt as if my fear was that he would be like every other doctor and send me home with no solution. A few weeks pass as I stood by my phone waiting for his call. He calls and tells me to immediately go get a CT that he ordered and I did. A week later I finally get my answer. This time I was glad I stuck through and found myself a diamond of a doctor. He saved my life.

I guess this story is to remind others that you need to be adamant about your health. You know your body the best. I get that doctors are the expert but they cannot diagnose you in the first visit. Sometimes if you feel like your symptoms are persisting. You have to demand to be tested for everything. Go look for a specialist who have treated people with your symptoms. You don't go to a chiropractor to get your tooth cavity fixed. Write down your symptoms. Track any changes. The process of diagnosing could take months and years. Be patient but be persistent. Never take no for an answer if you know you need medical intervention And mainly don't give up on yourself. You deserve the best service you can because it is your life. Have a healthy day!

Childhood Bully, We Meet Again

I am not sure ironic is the word to describe this story but it was surely crazy coincidence and unexpected. So the other week I went to get the routine bloodcheck at the hospital and ran into who else but my childhood bully. She came out of the door and called me into the room for blood draw. At first I thought " wow she looks familiar, can this be the mean girl who tormented me throughout my childhood years?" But I told myself that it was definitely not her since she was such a terrible, snobby, hateful person back then how could she ever be allowed to take people's blood? This was the girl who made fun of my weight calling me FAT, told me I had ugly clothes, ugly hair, and turned other girls against me. She picked on me relentlessly for years growing up until I finally lost weight in the 5th grade and we started wearing uniform so she couldn't make fun of my clothes. she was the ring leader of the mean girls and it all started in Kindergarten! Well I just kept quiet because taking blood already makes me anxious and nauseous. She then tells me "hey I remember you!". Immediately I thought ohh man she's going to say you were that fat kid who was a dork. But instead she said, " you were that artistic girl who draws really well, and would draw everyone's portrait." I said "aww thanks, It's good to see you again". Even though that was the worst painful and slow blood draw... She poked me three times with the big needle and could not get any blood. Finally she used the small butterfly needle and got some blood. I do not see her as a villain in my mind any longer. Funny enough I found it amusing that something so peculiar happened. I thank that because of her, I overcame the sadness of being subjected to her victim as a child and grew past it and became stronger. I thank that the person who use to make my life miserable is now contributing to my recovery. How ironic is that?

Can we talk about bullying? I have encountered many mean people or bullies in different shapes and forms until today. They can be a friend, stranger, enemy, even a family member. Especially during my time of sickness prior to people knowing how sick I was, they were mean to me. People called me fat, lazy, and moody. Well I was fat because I was retaining sodium, water, and fat because of my tumor. I was lazy because I was tired because the tumor causes fatigue, I was moody because the tumor chemically changed my hormones. So I am the way I am because of my health condition. What is the bully's excuse for being such a douche bag? This is a message to a bully and to all of their victims:

Dear Bully: Why are you mean? Does it make you feel better to pick on others? Gossip? Are you insecure? Why are you angry at others? Do you blame ppl for what goes on in your life? You have to say or do mean things to others to make yourself feel better than them. The truth is that the person you are bullying are on a higher level than you because they actually can take the high road and do not need to act the same way as you, next time you want to be mean to someone think about the situation they are in. They could be sick, taking medication, poor, going through a hard time etc... You should have compassion in your heart and be thankful that you are blessed to have what you have that was given from God. Be thankful you are not in their position. Maybe you should try getting all your facts before you pass a jugdement on someone. The people who are bullied do not have regrets on how they have treated others. Even years from now a good person will not have a guilty conscience but will a bully? The bottom line is that everyone wants to be loved. If you are nice, people will love you easily, but if you are unkind, people will have a hard time wanting to stay close to you. and when that time comes you will know. To those who are being treated badly: I know that it is not easy during the time of being bullied. It sometimes feels extremely hard to think that life will get better but everything will be fine and life indeed will get better. When I encounter an ignorant person who has angered me, I realize that those feelings are not real and I will get past it. I just remember that some people are not able to see God in their judgements because they only see THEIR own perspective and not a bigger picture. Have compassion that they are only ignorant and cannot see past it. And the most important part is to have forgiveness in your heart. Thank you all the bullies who have made me closer to myself and to God. <3

PS. Jesus is the poster child for being bullied. He was bullied his whole life. He was bullied to death. He knows exactly what being bullied was about. He went through a terrible case of being judged, hated, picked on. He got crucified by his bullies! But he is now our God almighty!

Feeling Better? A Good Surprise

Alright I'll admit I've been bad since my last entry.. I got curious to how I would do on a lower dose of steroids and self experimented. I took 27mg umm let's just say I didn't do too well. Yes I'm stubborn lol, although I'm not dying so I think I can handle it. I'll just keep it that way til the next visit to the docs which is in a month or so? Supposedly the magic number to stimulate the adrenal gland is 12-15 mg. I still have a long way to taper down... I think I might be feeling better? I see some improvement on some things and less in others. I guess I need to feel or see a huge difference to believe it but I am now livin life in the slow lane lol. We had some unexpected house guests this week.. lol

Vankey, Fatty &       ^^Tiny

Ever since the operation I haven't been feeling well or keeping track of the days going by. Yesterday there was a knock on the door I thought it was some delievery package and it was my best gal Jessica  holding some beautiful flowers. I forgot we planned months ago that she would come back one last time from Maryland to visit and I even wrote it down on my memo. Blame it on the short term memory! lol.. This will be the last time I see her for a while since she's in the airforce and will be relocating to Korea then Japan. I wanted to make a little memorabilia collage for her and found some old pictures of us through the years. Looking back at old photos is funny, I looked so dorky in the homecoming picture and what was I thinking going so blonde!! lol x]

2004

2006

2012

Today

I will miss her, & so proud of everything she's accomplished!

The Journey Begins

BACK STORY: My health is my pride. Growing up, I was the overweight chubby little kid. I was always active but I liked my chips, soda, and mcdonalds. That was until when I turned 11 that I decided I had enough of being chubby wubby and went to lose 20 lbs from diet and exercise. Let me say that quality of life gets much better once you lose alot of weight. I was always active skating, biking, and running around the neighborhood with family and friends. After that I continued to remain fairly thin and healthy. I would do sports like track, rotc, and cheerleading to stay active in school. I did have a certain time where I had a partying and drinking phase but who didn't and now it's over and done with. If there was a new health craze, I would be the first to try it. Friends and I would sign up for bootcamp, kickboxing, and pole dancing classes etc... I've even graduated from the 60 day Insanity workout program. I've tried detoxes, cleanses, eat veggies, fruits and drink lots of water in the name of health. I am always energized and never got sick. My health is my pride, I must be healthy right? Wrong...

SUBTLE SYMPTOMS: Last summer I was working and going to school. I felt stressed but nothing major but i had a weird feeling of my body in constant excitement. I couldn't sleep much but had a lot of energy yet felt fatigued. Then my period stopped but my cycle was always irregular since I was 17 so I thought nothing of it. Suddenly my acne got terrible and I started to gain a lot of weight in my cheeks but I just assumed it was stress and it will pass. My face especially my cheeks started to get really round but I've always had chipmunk cheeks so I didn't think much of it. Then I started to feel anxious all the time and it progressed to panic attacks at random times and places and when I say "panic attacks" I meant full blown ones where I thought I was going to die because I could not breathe and felt like I had heavy bricks on my chest. After those episodes, the feeling of the "heavy bricks" on my chest still remains til today. I started to become moody and was acting aggressive towards family and friends. I was becoming a person I did not recognize and wondered why I was feeling this way. Friends and family started to ask if I was pregnant and why I was breaking out.  One of my boyfriend's mean teenage sister said straight out in front of the family "you're fat now" and she started laughing at me. They looked at me like I was purposely letting myself go and doing this to myself. I was a confused mess. I was going through conflicts with some relationships and I assumed it was just more added stress. I felt like a terrible person so I decided to start going to meditation center for two months but I still had the "heavy brick" feeling on my chest and all the other symptoms. I was becoming depressed. My boyfriend tried to convince me to go see a doctor but I was too stubborn to agree. Note: my worst fear is to lose my mind or become mentally ill (no offense to anyone, I do think we all are to a certain degree) so I ignored all the signs and figured I will somehow fix this myself because my health is my pride and I have total control over my mental and physical health. That was until an awful attempt at suicide one night because I felt like I wanted all the strange feelings to end. It was a wake up call that I became what I feared the most and though I thought I had everything in control,yet my mind and body was slipping away. My boyfriend once again told me it's urgent to seek some help. Feeling defeated, I agreed.

THE DIAGNOSIS PROCESS: In January we made an appointment to see an endocrinologist. The Dr ordered me to take many blood tests and labs. Let me tell you that waiting for lab results is probably the worst part because it takes one to two wks for results and you're just thinking of the worst case scenario of "what ifs". the tests came back and the results were all normal except for one thing, I had abnormally high cortisol levels in my blood. The Dr thought it was a fluke so he ordered more blood tests. Great, more waiting... The next test revealed the same results of abnormally high levels. He then asked if I could take a ultrasound of my ovaries. then the results came back that I had Polycystic Ovarian Syndrome due to no menstrual cycle. okay good I thought, he'll just put me on some birth control and I will be fixed. Wrong.. He then ordered me to take a saliva and 24 hr urinary test. The results came back that my adrenals were pumping out abnormally high levels of cortisol and adrenaline. He then got concerned and had me go get a CAT scan. The CT scan was terribly invasive. I felt like a microwaved chicken for 15 minutes lol. Anyways I was getting worried as to why I would need a cat scan. I had to wait a week and my symptoms were getting worse coupled with joint and muscle pains now. Finally the day of meeting my doc my boyfriend and I were anxious to hear the results. I didn't sleep all night oddly fearing that we cannot find anything wrong and that I will forever keep taking more health tests and it is indeed a mental illness. The Dr comes in and with sympathetic eyes and asked me how I was doing. I knew then that the news would not be good. He then said "Van, this is alot to take in but you have an active tumor on your adrenal gland that is causing all the symptoms you are feeling. It is imperative to have it removed or it can potentially be fatal." he explained that the tumor is secreting hormones in my body that is causing me to have Cushing's syndrome. How could this be happening? I hear my boyfriend and my doctor discussing outcomes, costs, surgeons, health risks. But I had no idea what to think or where to start. I felt like passing out. How do I tell my family? How will I pay for this? What will happen to me after recovery? It was the longest drive home. My boyfriend decided to stop by berripop to cheer me up. We sat and ate yogurt. My boyfriend then looked at me and said "this isn't what we expected or prepared for, but hey hun guess what? I told you you're not crazy." That made me realize that my worst fear did not happen and I do have control over this situation. Also I am blessed that the tumor is not cancer and once it is removed, the Cushing's syndrome will go away and I am expected for a full recovery though it may take months to years depending on how long I've had it. My doctor told me I've been living with it for years now but the symptoms are now fully showing up. I suspect it started from when my periods became irregular. Looking back, no wonder I've always felt so anxious, stressed out, and aggressive for no reason. I never had regular sleep patterns and always gained weight in my cheeks which is typical "moon face" symptom that all Cushie's develop. I've always been a little furry lol and started to develop acne when I was around 19 but never had it in highschool like my mom and sister. The older I got the more I felt less like myself mentally and It was to the point I felt like my mind and body was falling apart. I always just blamed it on external things in life but now I know. It's hard to describe and understand what I was and am going through unless you're a Cushie yourself. but it's like you have no control over your mind and body everyday and the symptoms get worse and you don't know how to fix it. But It all makes sense now. From reading other's recovery story, the diagnosis is just the beginning of the battle but at least i know what I am dealing with and I am ready to take this journey to claim my health back.

my delicious cat scan smoothie lol

I had no idea an IV was needed for the scan