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!

Rae and Van's Symptoms

Hey guys, My friend Rae and I made a symptoms chart to compare how different our symptom manifestations were though we suffered Cushing's Syndrome. So don't judge a book by it's cover. So sorry I haven't been updating the blog, if you follow my Instagram @1delicateheart it basically will update what's going on in my life.. and of course I spam you with a lot of outfit of the days and selfies :)

Our comparison charts are rated from 0(none)-10(worse)
If you have a chance please check out 2cushiegirls.blogspot.com

PLEASE CLICK ON EACH PICTURE IF YOU WANT TO ZOOM IN

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!

The Meaning of It ALL..

When I was going through my darkest days, I questioned my will to live. Nobody should suffer that way in any lifetime. I felt a heavy heart and and nothing I did felt right. I had no one that understood the conflict and pain that was going on in me. Throughout the whole process of getting slowly sicker, getting rejected from doctors, friends and family, finding an endo, going through the tests, labs and scans, having surgery, then waiting for recovery--- It felt like it was too much to handle. I felt weak. People told me that I must be strong to still be holding on but I felt like any moment I would let myself slip away and find peace with God.

After all of the suffering, I did not know what I suffered for. Until this happened....

 

 ^sorry I couldn't get the whole message! But I replied to your recent email today!! Stay strong <3

 ^ When I started getting emails, messages, and comments from people (I am keeping their indentity anonymous) who are in the same position I was a few years back. These people are suffering, falling apart, and are on the brink of breaking. They need an answer to it all. That is when I realize my purpose of  all the suffering was to be here for these people, write this blog and tell them, I understand what they are going through. And am the example for them to know that if they hold on, they WILL be okay. These past few months have been getting better. and everyday I am getting stronger inside and out. I never knew how weak I was until I realized how much strength I do have now. If that makes any sense! lol. The weakness, suffering and pain is somehow becoming the strength I have within myself now. I just want to thank again to the recovered women who told me I will be okay. I remember life felt so pointless. My hair was falling out, my face was full of cystic pimples and scars, my face looked like a heavy saggy mask, my body was swollen. I felt like I would never get back to the way I use to look. But the amazing thing is that, I feel more beautiful than ever now than  before. I don't know how it is possible after going through hypercortolism. Maybe it took all of this for me to find strength and self love. I want to thank you for all the people who have reached out to me. And thankyou for reading my blog. If it weren't for you, I wouldn't know the meaning of it all and finding the peace inside myself. So please stay strong and I will be there whenever you guys need an ear, a prayer, or an answer or anything. <3

Here are some links for when you want to read more about other patient's stories and you can contact the recovered patients:

http://csrf.net/living-with-cushings/patient-stories/

http://www.cushings-help.com/toc.htm 

http://cushings.invisionzone.com/ 

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!

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!

What Really Happened

This Monday I was on the verge of a panic attack I had the feelings come on so I tried to smoke some and drank a little Nyquil to calm down and sleep it off. BTW I do not console anyone to do that! EVER!! Well it didn't seem to help so I called my nurse and she told me to go to the Neuro center at my hospital immediately. So I went and texted Muffin that I was getting some help. Apparently the nurse thought I was committing suicide and called the cops and ambulance. Well, I did tell her I was trying to "stop the bad feelings" I guess it can be misinterpreted Anyways during the time I went to the center I had to give up my belongings and my cellphone. I stayed for a day and talked to some Psychiatrists about my health conditions and how nobody seems to understand. They told me that all of my feelings are validated and said I had a "rough childhood" lol I guess.. Once I got out I found like 50 texts and missed calls from Muffin and family members worried and that's when I found out that 10 cop cars and ambulance came to the apartment that night. I just want to thank everyone for caring so much and apologize for scaring up a storm. The truth from what the Psychiatrists concluded was that I do have suicidal tendencies. But don't worry I don't plan on taking my life or harming others. I DON"T WANT TO DIE. It's just hard living with Adrenal Insuffiency as it was with Cushing's. except for the fact that you don't bloat up like a balloon.

Well let's talk about some GOOD PROGRESS

Today I went to see my doc, I still am Adrenal Insufficient. So still on the HTR. When they weighed me I was 112 lbs which means I have lost 16 lbs since Adrenalectomy. That puts me back to how much I weighed back in HS. This is with little to no diet or exercise! Ohyeah! The weird part is that I have gotten 2 inches shorter. I use to be 5'5 and now i'm 5'3. I made them double check and that's how the cookie crumbled. Maybe it had to do with Cushing's and osteoporosis/bone loss was a symptom. But yeah I guess the only good news is the weightloss haha! Atleast I can fit into that dress pictured below I wanted to wear to Muffin's friends' wedding. Initially I had trouble zipping up the dress when I first got it but the day of, it fit like a glove. I had reservations about going to such a public place but who could miss a wedding in the name of love?

Where's Miley?

My S.O.

Love these nails! Essie Polish and Essie gold Applique

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!

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