Prayers For My Friend

During the time I was sick, I heard alot of false misconceptions about my sickness. I was told I was fat, lazy, and moody. Just because I wanted to be that way. I was told maybe I should be healthier. I was told maybe my dogs gave me Cushing's. Also, I could just be stressed. I was told I that I am being tested by God. All these misconceptions made me feel I must have done something wrong to get myself this sick. Oh and this one is my favorite, "you're asian, you don't get Cushing's or tumors because those are Caucasian diseases." Could you imagine how crazy that sounds?

So I just want to set the record straight that it was none of the above that caused my illness. Cushing's is a abnormal mutation of the adrenal gland. It could have been any kind of mutation anywhere in my body but it was my adrenal gland. So that's that. The one that peeved me the most was the stereotype that asians don't get Cushing's. The reason I made this blog was to raise awareness for anyone who will stumble upon this, a cushing's patient, but I also made this to give voice that asians can get Cushing Syndrome/ disease. Or anyone else; a caucasion, latino, african, indian person...

Recently I was approached by a young lady from Vietnam named Nga Do. She emailed me asking for some advice because she thinks she has Cushing's but the doctor cannot confirm the source that is causing her Cushings. All they are telling her is that she has Pseudo-Cushings but no explanation. I am deeply affected that this girl cannot get an explanation for all of her symptoms. Also for the fact that we are both from the same country, it hurts that I cannot do more for her than to give her advice and pray for her. So I am posting this entry today for my friend Nga. With her consent I am sharing her story. I saw her more recent picture and it was almost like seeing my reflection in the mirror during the time I was sick too.  Nga, I know you will get better and I will be here for you whenever you need to talk. Thank you guys.

I ask that we can help pray for her to find an answer and have the best health she deserves.

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!

Falling In Too Deep

During the days of my full blown Cushing's, I was really down. I'm talking about random crying spells, panicky feelings, suicidal thoughts, loss of hope, feelings of guilt and shame etc... I guess you can call that the depression that comes with the illness but it is not a regular feeling of sadness that eventually passes.. It's the kind that gets deeper and deeper and all the while you feel so low in your head, you're fighting the cognitive, emotional, mental, physical symptoms that haunts you 24/hrs a day. It's like I couldn't go out and enjoy life when everything would make it worse, even laying in bed.. It's impossible to escape the sickness. I myself was always a happy person but slowly I started to fall deeper and deeper since I was around 19 or 20 I would say I started to feel little glimpses of this darkness. During that time I would say the suicidal thoughts were not morbid but it was just a way of wanting some peace and control in my life. I wanted all the symptoms to stop but there was no way to. Medications, diet, exercise, loved ones, happy thoughts could not fix it. Nobody in my life seemed to understand.... I couldn't bear living with it anymore. The only way I thought was to put myself in a very deep sleep. The kind where I don't wake up.

I was sad and isolated from my own illness... Luckily I found a Cushing's Support group that had a list of Cushing's patients pituitary and adrenal from  all over the U.S. that listed their phone and email. Desperate for any kind of answer, I emailed all the adrenal cushing's patients for help. I asked them how they dealt with their Cushing's and recovery. I also asked them about symptoms and how to cope with everything. I pretty much had all the symptoms like they listed except some are more prevalent than others. All of the women I talked to understood exactly how I was feeling. They told me things will get better once I get the surgery and my remaining adrenal gland will start producing what it needs. They all were honest that the recovery is sometimes even worse but I just need to take my time and push through because there is a light at the end of the very long tunnel. I just want to thank all of the ladies that helped me through those hard times. I am feeling like I am at the middle of the tunnel now and am feeling better today.

I want to say that after surgery, tapering replacement too low can make you feel extremely low too. About three weeks ago I was feeling that sadness again from tapering and PMS. Luckily I talked with a Cushing's patient Marian who connected me to a girl named Jess who was about the same age as me who had her surgery a few years back. We talked several times and she is happy and healthy going to College now. I was feeling sad that I am still adrenal insufficient, puffy-ish, and guilty that i'm not strong enough to deal with a lot. Stress just makes me so exhausted. She told me not to worry because she felt the exact same way and what I need to do was not push myself and to take a break until I start to feel stronger. I also have been seeing a wonderful Nun who talks me through whatever I am feeling. She gave me some wonderful advice that I want to share with you all she said, "this is the time to take a break and find your peace. Love yourself and let God handle everything else. God wants to help you heal but you cannot heal if you do not give yourself time to. Most people do not make the time to make peace with themselves. So see that this recovery time is to give it all to him, the pain, symptoms and you will have peace." eversince speaking to these women I have felt like a huge weight lifted off my shoulders and my days have been brighter eversince. Thank you everyone! This is great advice for anyone sick or healthy. I am starting to feel some peace and control again. I am not fully there yet but I am glad I am feeling awake and somewhat snapped out of the living nightmare called Cushing's.

There's not much but to wait it out during diagnosis, surgery, and recovery but here's a helpful link:
How to Cope with Cushing Syndrome or Disease

Undiagnosed, Untreated, Unheard

The other day I talked with my surgeon and doctors about how my symptoms are still persistent and they told me in most cases it is always a delayed recovery. They say most symptoms will have a significant improvement after 6-12 months. That doesn't sound too bad from a normal perspective, but having to live with it everyday makes it hard to tell if you're getting better, then when it gets real bad you just feel like it's never going away. From what I read on researching this illness, most patients go undiagnosed, untreated, and unheard for so long then after they have the surgery, they go unheard again. Luckily I have my surgeon who is educating medical students about Cushing's and listens when I complain. He sent me some new endocrine journals and articles about long term studies and evaluation of the disease. It talks about how there needs to be a better way to improve the recovery process because it is tedious for the patient and often after the surgery, the patient is expected to be "cured" however they have to deal with all the difficulties of recovering themselves. the other study talks about all the issues that come with the recovery and how symptoms improve. there's more interesting things discussed so I will post it up. In my opinion there definitely needs to be more support for Cushies after surgery from the Medical care that may help them feel as comfortable as possible. Maybe requiring more followups, requirements for psychiatric assistance, and some kind of better booklet that tells everyone what to expect after because it just seems like every person I've spoken to were unprepared for the long road after surgery. Oh yeah they totally need to update their booklet for symptoms!!

 I told my doc that I use to have dark orange tinted hands that even my bf noticed. The doc told me that only pituitary patients get the orange hands and not the adrenal patients... How is that possible? well it is the same illness, just different area of cause but idk doctor, my hands are not tang tinted anymore post surgery, just believe me and take note please... I did read somewhere that another adrenal patient had orange hands so it has to be a real symptom... I told them how tired I've been feeling and asked if it's related to the blood test and they say "possibly, but we are not sure". No disease or syndrome is "one size fit all" because some patients may experience much different symptoms than others but it is all real and needs to be heard. This disease is hard to understand but we need more help to unravel this mystery! Ahh this sucks.. I tried to post up the endocrine articles but it can't be shared and you need a membership to access these files.. Ok I guess i'll just put a link to a story about a woman named Shannon. Her story is another one that gives me strength, you gotta read it till the very end.
  http://cushingsdiseasestories.com/

LOVE love yourself

I recently talked to some women who have recovered from Cushing's and they have been so helpful with giving me insight on how to be a Cushie and how to recover from it. So thank you ladies. One thing that struck out is that all of them told me I need to love myself more in order to have a good recovery. For some reason, most Cushie's blame themselves for becoming this way including myself. I spoke with a lady named Julie and she said "I think the most important thing I want to tell you is to not beat yourself up over what has happened.  Cushings is a medical problem.  You did nothing to deserve it; it just happened.  You will recover but the process will be slow.  You must be very kind to yourself as you recover.  You must surround yourself with people who love and support you." Thank you so much for telling me that Julie. 

So far my symptoms are somewhat under control besides the muscle and joint pains. My awesome doc prescribed some beta blockers that has been helping the anxiety feeling and rapid heart beat. My lovely boyfriend has been giving me massages at night so It helps plus I try not to be on my feet for longer than thirty minutes. Also My wonderful sister has been coming over to help with whatever I need to do in the day time. The memory loss and lack of focus is an issue but oh well I prefer not to remember much these days anyways lol. Before knowing about my condition I thought all these symptoms were due to me getting older and use to joke about it but truly feel like a senior citizen now lol.  Another helpful advice I got was to not fight it and get frustrated but rather have acceptance that some things I simply cannot do I don't have control over and it is okay. it's just temporary. It's okay to have others do things for you in the mean time. For the longest I have been pushing myself to work, study, drive, cook, clean, run errands, going out with friends or seeing family. Seeing friends and family is the worst because they have so much expectations and for some reason they want to be too involved suggesting too many things but hearing all their assumptions of "oh you must feel this way" "oh you need to do this and that" is not very helpful because they have no idea the mental aspect of this syndrome. Yes online there are lists of what a cushing's patients physical symptoms are but there should be a long list of the mental, cognitive, emotional signs and symptoms. I no longer have the energy to explain to people what goes on in my brain of how this syndrome causes me to feel. That I can only be around certain people who are with me 24/7 or from day one who do not trigger my panick attacks since they understand how to handle it. I now have to limit conversations with my mom. I know with family it's from a place of sympathy and love and I love them to death but for a cushie, it just feels overwhelming... All the women i've spoken to told me the fastest thing that recovers after surgery is that their state of mind changed instantly and the anxiety was gone. So I look forward to having that normal feeling back. whatever "normal" is since I thought all of these feelings were normal but they aren't.

 I've always given in to expectations of others and myself because I don't want to lose control over what I can and cannot do but I think It's time for me to know my limits and see it as a step to loving myself more. I found some videos and other fellow recovering cushie's that's been so instrumental to me.

- sharmyn's story youtube
-Steph's picture timeline
-Cushing's disease, moods, bi-polar youtube
-puremoonlite's recovery youtube

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

Healthy Yet Sick: Adrenal Tumor/ Cushing's Syndrome

Hello this is my first time blogging. I will start out saying that last week, I was diagnosed with a tumor on my right adrenal gland (top of kidneys) and I have Cushing's syndrome. I have been living with this for years but had no idea until now. This blog will journal my experience from diagnosis to recovery and share my story to others out there who are struggling from adrenal disease. There is not enough information out there about Cushing's and adrenal tumors. More often Cushing's disease is associated with tumors in the pituitary gland in the brain not adrenal gland. Adrenal tumors are rare since it only affects 2 out of a million people for both adenomas and carcinomas. Both are also 4 to 5 times more common in women than men. YEP i'm that lucky 2 out of a million. This condition is more common in horses and dogs than in humans. Well this is just a diary to help me cope through this hard time but maybe others out there like me will find this and I hope this can help someone else.