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!

My Hair Has Been Electrocuted

Hello! Sorry it's been a while since my last entry but I just wanted to talk about our physical appearance during Cushing's Disease (CD) and going through Adrenal Insufficiency (AI) As all of you patient's know. The physical changes are so severe that even the most confident person would feel insecure. I want to talk about hair this time.

I've been trying to grow my hair out since my last haircut a few months ago. Lately I have been distracted examining my hair. For the past few weeks I have been noticing another change in my hair texture. When I had CD my hair was falling out, I had some bald patches in the front and overall was thinning. It was oily so It was still soft and shiny though it was very thin. I noticed that after surgery, My hair started to regrow and fill in the bald patches however the new hair growing in is very course, dry and rough in texture. It is still fairly thin as my ponytail is a measly half fistful and now it looks dead and dull. I traded the balding for courser crinkly hair. I am not sure how I feel about this, other than I am completely distracted with how it feels. Almost like I've been electrocuted lol

A bit worried, I talked to my friend and she confirmed that the hair issues are from steroids and possibly AI. And her hair improved when fully tapering off. I hope in time my hair will start growing in better and healthier. Not only are we plagued with waiting for our health to get back but we have to be patient for our appearance to get normal. But Don't worry about it Cushies! Worst case scenario is that we could shave it all off lol just kidding >.<

As my lesson in health and recovery continues, I realize that the best way to get through these changes is to let go of our attachments to things in our life such as the past, the way we use to look, anger towards things we cannot change, material items and the way other people view us. Yeah that's a hard pill to swallow being a 25 year old girl/woman who is vain as the mortal version of a Kardashian. But I must remember that things were worse and now getting better. I almost forget that while comparing old photos pre CD, I look better now because I have some kind of inner self esteem I discovered during this whole process. It helps me to feel comfortable in my own skin and accept myself regardless of how I look. It kind of just radiates and people seem to approach and say hi to me. Unlike before people seemed to stare at me for the way I was dressed or the ridiculous amount of eyeshadow I wore lol OR maybe, it's because I seem happier :D

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

Losing Your "Spark"

I talked to a Cushie friend of mine a while back and we talked about how great it feels to be looking more like ourselves these days. Shopping has been so enjoyable, to the point of becoming a shopping addiction. I was always a shopaholic before but now I feel like I want to buy everything I try on so this is not good for my piggybank but who cares I feel great about it! Another thing we talked about was though we look so much better than during our Cushings days, we still feel like our face has changed... like we lost our "spark". You know the feeling of how fresh faced and bright eyed you looked in your Highschool or College pictures but now you look in the mirror and see tired looking version of your old self? I mean, we both are very young but after Cushing's, and Adrenal insuffiency, we don't have that glow anymore.

During the early stages of my sickness I already noticed that my eyes looked different. It seem to have a blank stare instead of an emotion. In most pictures my eyes would look dead even when I am smiling. Then a few years into Cushing's, my eyes seemed like they were getting smaller and my eyelids got really heavy like I couldn't open my eyes wide. My nose looked like it was growing. I felt like my whole face got heavy that I just looked like I was frowning all the time. Then my lips which use to be my favorite feature began to look thinner. My skin was becoming reddish orange tinted and the acne was growing on top of my skin. I just felt like everything changed dramatically from the fresh face I use to have.

At that time, there was nothing I could do to fix my physical appearance but I had alot of people suggesting what they think I should do. It was overwhelming. I am happy to say that 11 months out of surgery, everything is improving so much. Everything that I mentioned above seemed to reverse. It's crazy but it was like the Cushing's literally melted off my face and body. Still being adrenal insufficient isn't easy. I feel tired all the time and my face does too. Even though I look the same as before, maybe even skinnier... The fatigue hasn't left my face. My under eye circles are getting darker and I still feel that tiredness in my eyes even though I can open in wider now. I hope in time when my hormones start raising up that I can see that spark again. But until then, make up, filters and a good sleep is my best friend =] Here are some makeup tips I've been posting on IG. People ask why I don't start a makeup youtube but I am too awkward on camera so I am easing my way into it with some "how to" snapshots!

Barefaced with just my eyebrows and lipbalm on ^.<

Blue Eyeliner helps your eye whites look whiter so you look more awake

Blue Eyeliner :)

 Now If you want something more dramatic for a night time....

Add some fuller false lashes and darker eyeshadow for a night time look

Make up can make you beautiful on the outside but being gracious will make you beautiful on the inside.

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/ 

My Battle with Depression, Suicide & Stuck Up Betches

I've been fighting with depression for a very long time. In the past as a young child, I was bullied for my weight. Everyone called me fat and ugly in elementary school. My family was not too well off so I didn't have nice materialistic things so I was bullied for that too. It doesn't help to have vain, judgmental, abusive people around while growing up either. (not my parents) of course.With all of that being said I am growing into a woman of my own and do not call myself victim to these experiences however they do make me more predispose to the likelihood of being depressed.

Chubs

Life in general felt rough to me. I had no one to tell me what was right and wrong and usually I would make the "wrong" choices. I did lose weight when I got to middle school and found a bit more self esteem and made some friends. Still, I felt awkward and I was not comfortable in my own skin. When Highschool rolled around I blossomed into a young lady and shedded the awkward phase. Not to say my blonde phase wasn't awkward! lol anways, I joined rotc, sports, cheerleading, and extra curriculars to validate that I was accepted socially. I did pageants and other stuff on the side to feel more beautiful. All those things did temporarily void my emptiness however when it was over, so was my little life. Then I would go on to find other things to temporarily fix the void. Deep down I was still the scared little fat kid.

In the beginning of University I made a lot of new friends and partied a little too hard. Which is OK because we all go through that phase and nobody can judge us for wanting to have fun and enjoy life. However I lost sight of who I was. I put away the scared fat kid to become another persona which everyone seemed to enjoy. But those days I have to say that I didn't like what I was becoming. I was hanging out with bullies. The people who inflicted pain in me when I was young were now the people I called friends. I hated them but mostly I just hated myself... I drank & smoked the pain away. Finally reality hit me that I don't want to be that way anymore. I stopped seeing these certain people (not all) and decided its time for some soul searching. I never felt more depressed and alone at that point. I chalked all those sad emotions up to my losses. But something deeper was hurting.

A year later I was hurting inside. I hurt so much that I stopped going out at all. I stopped seeing family members who put me down and I stopped self medicating. I was going insane with my anxiety that was growing so strong. I was paranoid and felt like I had a demon inside of me. I began to look in the mirror to see a face I didn't recognize. My face was getting swollen, cushinoid, acne all over down to my neck. I stopped getting a period and stopped feeling like I was a woman. I felt like a monster. I had intense feelings of mood swings and did not know why. I felt more depressed, anxious, and rapid heartbeat. I was so fatigued. I saw it in my eyes. I blamed myself for becoming that way. I must have been a terrible person to deserve this. Family & others shamed me for looking that way. Nobody was supportive or there for me. I will never forget the day this irrelevant person called me fat in front of my boyfriend and laughed in my face. You had your chance to make it right with me, and you haven't. I forgive you, but I will never forget what you did to me. Because of you, I started having suicidal thoughts. It's not because they called me fat. It's the fact that someone had that much hate at me to say that to my face in front of other people then laugh about it when nobody asked for their opinion. But whatever happened was in a way a good thing. Atleast it helped me hit rock bottom.. Well, I was already at rockbottom before that. That was just kicking someone when they are down.

                  This was my pain, please do NOT attempt. If you are having thoughts of hurting yourself or others, please contact immediate help or hotline!!

Everyone has inner pain, and inner demons they fight. Most people can hide it from the things they do everyday but whatever that was happening to me was about to come out. I was falling apart. One night I started getting panic attacks. It was the worst feeling ever. The next time I had a panic attack I decided I DO NOT WANT TO LIVE ANYMORE. I took a lot of sleeping pills and walked out to the third floor balcony. I said a prayer to God, "please forgive me but I can't live my life feeling this way anylonger" and sat on the railing of the balcony ready to end the pain. Luckily Muffin saw me and held on to me. My second attempt was when I started cutting. I made a cut for each pain I felt. Then Muffin caught me and told me I needed to see someone to figure out what was wrong with me. I told him I hated myself and my life and he said, "listen to me, you are not yourself this past year, you are a good person, you're not yourself and we will figure it out." I thank him everyday for telling me I needed to find help and it wasn't me. When I finally went through the months of diagnosing Cushing's things were not easy but it made me feel so much better that I had an answer to why I felt that way.

After surgery I expected to feel better immediately but instead I felt worse. Due to extreme low levels I was getting even more depressed and anxiety. But it was different this time. It was intense and I had crazy CRAY CRAY thoughts. Anyways I decided to seek help of other patients and hear their story and most people are the same as in "be prepared for the long recovery". I will say the sadness took a turn at month 5. The feelings became less intense. I felt more at ease. The little things don't bother me anymore. I smile more than have strange negative thoughts. Then two weeks ago from today, I felt REALLY good. I can't explain it. Sure, I'm probably still more prone to moods than a normal person but that's okay. Atleast I am on my way to brighter days. I am not "there" yet most definitely. Here's my advice for depressed person or Cushies before, during, after: Get a psychologist, get meds from a psychiatrist, talk to a counselor. Seek advice from other patients including ME! I would love to answer any questions you have. IT DOES NOT HAVE TO BE THIS WAY. I am not myself yet but I am getting close to an even better version! I'm so glad I did not give into the darkness and there is better things to come. I want to thank all of the people who gave me advice that I will feel better in time. You guys were right!

I wish I could tell my old self that I am good enough as I am. Everything will be alright. Just be yourself and everything else will follow. I'm thankful to have been through the sadness because now, I have room for happiness. I've been slowly peeling back the layers or false belief and pain and revealing the wonderful thing that we all are. Perfectly imperfect Purrrfection!

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!

When Healing Begins

Now that I am free of the Cushing's Tumor, I am given a gift for the ability to heal myself. This is the gift that enables any damage that has been done to my health, body and mind in the past to be reversed. The damage that has been done was many things from the list of symptoms. However I need to address the damage in another form that I hold responsibility for. For a long time I never wanted to accept that illness could or had happened to me. In order to start my true healing, I needed to accept the situation for what it is, however I am one to resist the thought of something I don't want. But not only did it make the process slower, it caused more friction within my energy and finding the peace I wanted.

During serious ailment, the body is weak so there is no defense to protect the mind. The sickness tends to take over but we have to be conscious of the situation and accept it. It is not easy to do so especially for a sick patient. But we have to know that we are not our "tumor"-- the one that creates the painful symptoms, or even our mind-- the thoughts that can create bad feelings. Being aware of the triggers and fears are very helpful. What I have learned is that the only thing I needed to do was to let everything run it's course instead of fighting it with nonsense worry and thinking. I can accept that I am not who I use to be anymore. Now I am given a chance to change and become stronger, grow happier, and make peace with my life. And if it took all of this to happen then thank God it did!!

 

Happy Halloween!

This is a homage to the little kitty >.< Meo Meo!
 

I'll keep this one short. Dear diary, do not let me have a sip of hard liquor!! Let's just say I got wild and took less than 3 shots the other night and my stomach is still not happy today.. I guess one glass of wine or cocktail is fine but I think I gotta put my old partying days behind me. Atleast until my body will let me again haha.. Well HAPPY HALLOWEEN! ^.^

Trying to feel "normal"

So it's been 5 weeks since the op and I am trying to feel normal. I don't know what normal means but I still feel strange. I had to return to my normal medication doses because my self experiment was not very successful lol but I am going to try to taper again once I feel okay. The memory is somewhat improving I think? But then again I keep forgetting to take my meds at the right time.. -__-  My symptoms are still persistent but the good news is that I have a few moments of mental clarity but then the "Cushing's" feelings return. I might feel like a can breathe and relaxed for about 30 minutes to an hour a day usually when I first wake up and take the highest dose of meds.Then it starts to go downhill til I take the next dose at 3pm. The night time is the worst because that's when the weird fatigue, headache, nausea and anxiety etc feelings are the strongest. I can't make it go away and I am now having more nightmares of still being sick. It's hard to believe that I am fixed when I feel so blehhh. I don't know if I am coping very well but I feel traumatized by what has happened. I talked to some recovered women and they told me that anti-depressants helped them through the recovery process but I don't think I want to go that route. I believe that I am prone to depression because of the Cushing's and feeling physically blehh during this time but I am not depressed. So I am thinking of alternative therapy to help me cope. I find that walking a bit during the daytime helps and also trying to do more things I normally did when I was healthy though it's more of a challenge these days. I am still trying to find the right balance. I hope one day I can get to the point of feeling like myself again and being completely healthy and not having to think of Cushing's anymore.

To keep track of my progress and to remind myself that I am improving, I keep a daily log of improvements on the symptoms and also take weekly pictures. I don't feel or see a big improvement but family have commented that my moonface has been shrinking. My sandals are loose on me, tummy isn't as bloated and my glasses fit my face again!! lol prior to surgery my face got so swollen and big that my glasses were too tight haha I guess that is a good indicator that I am headed in the right direction. Though I may look a bit better, I still feel all sorts of weird inside. But I will continue to move forward the best I know how. Here are the photos from before op to post op. I tried to be consistent with the photos. It's noticeable how pre-op all the pics looked so dark and gloomy and my eyes are so tired and sad looking even though I was smiling and after surgery it's brighter and I kind of look happier. reminds me of that blue song I'm blue da ba dee da ba daa lol