This channel will be dedicated on videos about my experience with Cushing's Syndrome, My health journey and what i've learned. I've been getting a variety of questions concerning Cushing's, health, diet, and skincare routine so I would like to share it with you. I hope that talking about my experience will help others who are struggling know that there is a life after suffering from an illness and you are not alone. I was never confident enough to put out videos but if it can help someone why not!! Please feel free to comment below about anything :)
Showing posts with label disease. Show all posts
Showing posts with label disease. Show all posts
Saturday, June 24, 2017
New Video Up!
This channel will be dedicated on videos about my experience with Cushing's Syndrome, My health journey and what i've learned. I've been getting a variety of questions concerning Cushing's, health, diet, and skincare routine so I would like to share it with you. I hope that talking about my experience will help others who are struggling know that there is a life after suffering from an illness and you are not alone. I was never confident enough to put out videos but if it can help someone why not!! Please feel free to comment below about anything :)
Monday, March 28, 2016
Cushing's Frequently Asked Questions (FAQs)
Happy Spring! Hope you guys are doing well, and if you are not.. You've come to the right place to read and connect with my struggles and experience with Cushing's. Remember to check my 2013-2014 blog archive here: My surgery and recovery experiences to read posts I made during my sickness about diagnosis-recovery.
------> SCROLL DOWN FOR FAQs
So this year I've been so busy with moving on from all things Cushing's now that I have recovered, I finally finished school and I also have a job now. It's quite nice to push myself out of my comfort zone and seeing myself grow and living a fuller life than when I was sick. I still have low days and working long hours can be very tiring to the point I will sleep all day on my off days but so far I have tried my best to balance it all. I have also been pushing myself to socialize and try new experiences and it feels great. Let's get into the main point of this entry..
Ever since I have made my Cushing's story available online, I have been getting a lot of people contacting me whether cushies or people who think they might have Cushing's asking me questions about my experience. And as my schedule is more demanding these days, I don't get back to my emails, direct messages etc as quickly as I use to and often I don't give in depth answers when I am busy or I forget so I will make a frequently asked questions (FAQs) here. I hope this answers most of your questions and if I am missing something you want to ask, feel free to email me at yumnguyen07@yahoo.com
A) My doctor told me he thinks I've been sick with Cushing's Syndrome for about 4-5 years. I can almost pin point the time was when I was around 18 years old was when I started having irregular absent periods. and started to feel the mood changes like depression and bouts of crying over little things in life. I started to feel withdrawn and socially awkward and had a lot of racing anxious thoughts. Every year symptoms grew stronger and I grew more confused about myself and my life til the breaking point of the year I got diagnosed which I was 24 at the time.
Q) What were your symptoms?
A) my symptoms were depression, anxiety, rapid heart beat, high blood pressure, weight gain, moonface, severe acne, no menstrual cycle, orange hands, muscle loss, fatigue, heavy eyes, suppressed allergies, weakness, hirsutism, bruising, poor wound healing, hairloss, short term memory loss, belly fat, small buffalo hump,insomnia, restless, PCOS, frequent debilitating panic attacks.
Q) What doctor did you see?
A) Before getting diagnosed, I went to see several family doctors who ignored my complaints and told me I had depression and needed antidepressants and some told me I had PCOS and needed to get on birth control pills. Overall, most tried to treat my symptom but not the root cause. Some just told me I looked fine and sent me away. I finally went to see a endocrinologist aka hormone doctor and he was still skeptical but I pushed him to test me for everything under the sun and he agreed. Upon seeing my cortisol results were high in a blood test he decided to further test my cortisol.. My doctor works at houston thyroid and endocrine specialist his name is Dr. Elhaj.
Q) What tests were taken? How did you get diagnosed?
A) Diagnosis for me was in the course of 3 months of testing, results, retesting.. I took a Hormone blood Panel, Blood cortisol test, 2 dexamethasone suppression test, saliva cortisol test, 24hr urine test, and lastly when my doctor found out where my tumor was secreting from, he ordered me to get a CT scan of my adrenals and found a tumor on my right adrenal gland. (Some patients may have to get a pituitary CT scan if that is where your tumor is as majority of cushies get pituitary tumors and some rare cases lung tumors.) Also it's always good to start off with a simple cortisol blood test but even better to get all your hormones evaluated to rule out other conditions.
Q) How did you cope with Cushing's and while waiting for surgery?
A) I think the most challenging part was before getting diagnosed and just struggling internally wondering why I felt terrible and looked terrible. I blamed myself a lot and felt so much shame. I was terrible to myself and drank alcohol as a way to cope. During diagnosis I was impatient and annoyed for having to take so many tests, spend money and wait what felt like long weeks until I got my results. The feeling of not knowing would eat me up inside for months.. When I got diagnosed, I accepted my fate and felt like a huge weight was lifted off my shoulders. I learned the lesson of patience and gratitude and how grateful I am for my doctor making me take all these tests. I started to tell myself that it was not my fault that I am sick. I gave up on fighting myself and decided to love myself more. I took a break from socializing and school since it was too stressful getting panic attacks in public. I told my family and friends but needed space so I took time off from everyone to just be on my own.
Q) What type of surgery did you have? When was it?
A) So after getting diagnosed, I worked with my endo to schedule surgery and find a surgeon. (Always work with your doctor to find the best treatment route for your situation) You basically can shop for the lowest price surgeon and choose who you want to perform your surgery. You can also contact NIH Cushing's research in Maryland if you want them to take on your case and sometimes they will offer help if you qualify for their Cushing's research. I found a surgeon named Dr. Suliburk and he has been experienced in doing tumor removal for Cushing's patients. He performed a Adrenalectomy and removed my whole right adrenal gland since removing the whole gland guarantees the tumor will not come back. It was performed May 8th, 2013
you can read about it here: My adrenalectomy
Q) How did you feel Post Op?
A) I felt nauseous and like someone punched me 1000 times in the stomache. Hard to eat due to nausea a few days and still very swollen since they injected me with more steroids just in case my body goes into shock from having no cortisol in my body. I was sad and disappointed because I had no patience in myself. I felt worse and wondered when I would start feeling and seeing improvement.
Q) How long til you Recovered from Post Op?
A) I was in the hospital for 3 days because I had some bladder issues that needed to be resolved before they could release me. Day 1 was hard to walk or eat. Day 2 I walked and ate a little bit still very nauseous. and when I was released from hospital I was at home laying around eating soup About 2 weeks I started to feel better and 8 weeks my wounds healed and I went swimming. I tried to walk 15 minutes daily and had bouts of nausea throughout. So healing from surgery is easy part, recovering from Cushing's is the hard part..
Q) How long til you recovered from Cushing's Disease?
A) Approximately 18 months til my remaining adrenal gland started producing cortisol again
Q) What was your Recovery like? How was your Adrenal Insufficiency?
A) Very challenging.The first 2 weeks post op I could not do anything because I would feel dizzy, nauseous and want to faint. I started off on hormone replacement therapy with 30mg of hydrocortisone to supplement for morning and afternoon. If I missed a dose, I would feel terrible and start showing signs of a adrenal crisis aka my body shutting down from no cortisol hormone.. I also tried to cut down my steroids too soon and had a adrenal crisis filled with faintness and trembling. I had night sweats and loss of appetite. My depression felt more severe and I cried often. I no longer had the moods associated with Cushing's but I was always just very sad and had low energy.. I had highs and lows throughout and til this day I still have side effects of fatigue some, acne scars, tiredness, irregular periods, low moods.
Q) You seem to recover fast, When did you notice symptom improvements during recovery?
A) Trust me when I say I did not recover fast! Doctors said I was not extremely overweight because I also was an athlete most of my life, young and was on a strict diet for years prior to getting diagnosed so I had more muscle mass and bounced back easier. but it took me a full 2 years to fully recover. The first 3 weeks I noticed my moon face was shrinking. At 3 months there was a huge improvement on my moonface and I started seeing weight loss. At 6 months I started to look like myself and had more energy and adapted to adrenal insufficiency and was at my lowest weight since highschool. In one year my depression and anxiety improved but still had not gone away. My insomnia improved and I started taking naps which I never did before. My period returned even though still irregular I got it every 3 months or so. started getting restful sleep. Joint pains still happened but mainly during the cold. In 1.5 year Muscle mass increased. I continued school and started socializing. Acne was gone, had severe scarring. Hair growth started. Blood pressure improved. fatigue was improved. Better moods. less hirstutism aka body hair, it literally just become thinner and less noticeable. My allergies returned which is suppose to be a good thing since cushing's suppressed it for a very long time. Increased energy. Everything improved all the way until the 2 year mark was when I felt almost fully like a better version of myself.
Q) How did you cope during recovery
A) As hard as it seems, you have to be nice and love yourself. You have to avoid stressful situations at all cost. Cut out all the negative people in your life who are neither supportive, encouraging or too selfish and only looking out for themselves. Don't let bullies get you down. If people talk shit to you or put you down, that means they are an ignorant ass hole for putting down a sick person. Surround yourself with supportive people even if that circle is very small. Animals help you feel better by offering unconditional love. Remind yourself that even though you feel terrible, there will be lots of highs and lows during recovery. nothing worth having comes easy. Be patient, laugh often, watch funny movies, do things you enjoy. You don't have to be okay for anyone just do what makes you feel good. People don't have to "get it" so don't waste your time proving anything to anyone. Take lots of progress pictures and compare before and after pictures to see how much better you are and it helps remind you that you are getting better. Try to sleep and drink lots of water and eat your vitamins. You will have bad days lots of bad days but as time goes by you will have more good days and it will start to feel consistently good. Don't get in the way of yourself and Let yourself heal.
Q) How did you taper/ wean off steroids (hydrocortisone)
A) SLOWLY and small increments being tapered off. I was on hormone replacement therapy on Hydrocortisone. I started at 30mg and after a month I went to 25mg then another 3 months I went to 20mg then another few months I went to 15mg. At 15mg was where i struggled to lower the dose and started feeling very sick with adrenal insufficiency. So I stayed there for a while and during my last 6 months before I recovered, I went down to 10mg then at 5mg was when my remaining adrenal gland woke up and started producing low amounts of cortisol. Still I was taking hydro on and off when my levels felt too low. I still feel like I have low cortisol days but I try to adapt without the use of steroids now.
Q) You look skinny, Did you go on a diet/ exercise routine?
A) I may look skinny but I still have belly fat which I do a good job of concealing in clothes and photos but my stomach and overall body fat has decreased greatly. I did not diet post op but did lose a lot of bloating, water weight and fat overall since I was no longer producing high amounts of cortisol and was adrenal insufficient. I ate whatever I wanted however I had loss of appetite so did not eat big portions. I also took 15 min walks everyday and slowly worked into 30 min walks. As a past athlete, I no longer have any stamina or endurance so I don't really do high strenuous/high impact activities like running. Maybe eventually I will train my endurance again. Also in my previous answer, I had more muscle mass than the typical cushie and my doctor credits it to youth, healthy eating, exercise and being an athletic most of my life. So I did not gain as much weight during my sickness I was about 20-25lbs overweight. Now I go for hour long walks my dogs, go to the gym twice a week mostly weight training. And though I am not eating the healthiest diet right now I avoid sugar on weekdays carbs and try to cut back calories when I over indulge the day before. I think portion control and watching sugar is the most important thing for me. But everyone is different so do what works best for you and make sure everything is in balance.
Q)What can your friends, family or spouse do?
A) Before I was diagnosed, I felt like I was being misunderstood often and was judged for how I looked and my anxiety ridden behavior. Friends said I was acting weird and sometimes gave me weird looks as if they were trying to figure out what was wrong with me, some family members called me fat, my aunts and grandma tried to give me advice on how they cured their acne. They even started making theories of why I got sick. All of that stuff really adds up stress and made me feel ashamed and I would react by anger, having panic attacks or feeling more depressed. Once I did get diagnosed, it seemed that everyone started to be a lot kinder to me but at the same time they still had to give me advice on how to be... I told most of them I needed my space and to support me if they wanted to but don't tell me what I should be doing to help "fix" myself. The only person who was very supportive to me was my boyfriend. At first we fought a lot because he didn't understand my issues but he became a full time care taker once I was diagnosed. I know being the spouse or caretaker is not easy. And So I asked my small support system what they want other spouse, family or friends to know, in their words they said, "to have your caretaker/spouse/family be educated on your condition and be very patient with the recovery. There will be times that its too much but understand you cannot break down. You have to be strong for them and support them til they recover. Be positive in the recovery and don't be negative. If you see signs of a negative enviroment or people remove your loved one away from it. Seek help to those who will support not criticize every decision you make."
I am very thankful that my support system decided to stick around and be my rock and shoulder to cry on. They were selfless and now we have gotten through this hurdle together. Now our relationships has gotten better and we thrive on new experiences together. They would not have changed a thing and were glad they stuck around through the bad times so now we can have great times together. They are shocked of how well things turned out and even how much my physical/psychiatric improvements progressed in recovery.
Q) So after all that happened, How do you feel today?
A) Overall I feel great. I am back to living a fuller life. I still have days of low energy and other non related health issues but the most important thing is that I have my mental clarity back so I cope with problems much better. I have come to terms with all the loss and grief I felt during my sick cushie days. I learned many lessons and have gotten stronger as a human being. I have more compassion for others and find much fulfillment making others feel better with beauty, health, cushie advice, blogging, and being positive. I learned to be more patient in life and that nothing is always what it seems. I judge less and embrace every soul that comes into my life. I am grateful to have been through this journey and met some awesome cushies and new people along the way. I want to thank all the recovered cushie patients who shared their story, replied to my emails and helped me during my time of struggle. The reason I am so public about my journey is because I have a theory that this disease isn't so rare and more people have it that are going undiagnosed because it's still a mystery and unknown. Thank you guys for reaching out and telling me your story and using me as a tool in your journey. I will always be here to talk and help you go through whatever struggle you are going through. I have been through it and know you are not alone.
Q) Do you have any other advice?
A) As far as those having trouble getting a doctor to listen, make a list of your symptoms. Show them a photo of how you looked when you were healthy so they have a point of reference and can visually see how your features changed. Never take no for an answer and keep fighting for your health. Get second opinions if the first doctor is not being useful. Find the root cause of your health issues. Find a endocrinologist with experience with Cushing's patients. Also I always remind others to take lots of progress photos to remind yourself you are recovering. Remember always that there will be bad days and good days ahead but you will get better. Also remind yourself of the the things you'll be able to do once you recover. Plan a trip, go to the beach, train for a marathon, start a hobby, do something you've always wanted to do but was afraid to. Be kind to yourself and do not blame yourself for anything. Let go of anything you have been holding onto that hurts you. Forgive yourself and others. Don't be ashamed of being sick. I didn't know then but during all of my hard times were the times I had the most personal growth that helps me cope with life better today. Embrace the whole process and keep looking forward.
------> SCROLL DOWN FOR FAQs
So this year I've been so busy with moving on from all things Cushing's now that I have recovered, I finally finished school and I also have a job now. It's quite nice to push myself out of my comfort zone and seeing myself grow and living a fuller life than when I was sick. I still have low days and working long hours can be very tiring to the point I will sleep all day on my off days but so far I have tried my best to balance it all. I have also been pushing myself to socialize and try new experiences and it feels great. Let's get into the main point of this entry..
Ever since I have made my Cushing's story available online, I have been getting a lot of people contacting me whether cushies or people who think they might have Cushing's asking me questions about my experience. And as my schedule is more demanding these days, I don't get back to my emails, direct messages etc as quickly as I use to and often I don't give in depth answers when I am busy or I forget so I will make a frequently asked questions (FAQs) here. I hope this answers most of your questions and if I am missing something you want to ask, feel free to email me at yumnguyen07@yahoo.com
Frequently Asked Questions
Q) How long have you been sick with Cushing's Disease/Syndrome?A) My doctor told me he thinks I've been sick with Cushing's Syndrome for about 4-5 years. I can almost pin point the time was when I was around 18 years old was when I started having irregular absent periods. and started to feel the mood changes like depression and bouts of crying over little things in life. I started to feel withdrawn and socially awkward and had a lot of racing anxious thoughts. Every year symptoms grew stronger and I grew more confused about myself and my life til the breaking point of the year I got diagnosed which I was 24 at the time.
Q) What were your symptoms?
A) my symptoms were depression, anxiety, rapid heart beat, high blood pressure, weight gain, moonface, severe acne, no menstrual cycle, orange hands, muscle loss, fatigue, heavy eyes, suppressed allergies, weakness, hirsutism, bruising, poor wound healing, hairloss, short term memory loss, belly fat, small buffalo hump,insomnia, restless, PCOS, frequent debilitating panic attacks.
Q) What doctor did you see?
A) Before getting diagnosed, I went to see several family doctors who ignored my complaints and told me I had depression and needed antidepressants and some told me I had PCOS and needed to get on birth control pills. Overall, most tried to treat my symptom but not the root cause. Some just told me I looked fine and sent me away. I finally went to see a endocrinologist aka hormone doctor and he was still skeptical but I pushed him to test me for everything under the sun and he agreed. Upon seeing my cortisol results were high in a blood test he decided to further test my cortisol.. My doctor works at houston thyroid and endocrine specialist his name is Dr. Elhaj.
Q) What tests were taken? How did you get diagnosed?
A) Diagnosis for me was in the course of 3 months of testing, results, retesting.. I took a Hormone blood Panel, Blood cortisol test, 2 dexamethasone suppression test, saliva cortisol test, 24hr urine test, and lastly when my doctor found out where my tumor was secreting from, he ordered me to get a CT scan of my adrenals and found a tumor on my right adrenal gland. (Some patients may have to get a pituitary CT scan if that is where your tumor is as majority of cushies get pituitary tumors and some rare cases lung tumors.) Also it's always good to start off with a simple cortisol blood test but even better to get all your hormones evaluated to rule out other conditions.
Q) How did you cope with Cushing's and while waiting for surgery?
A) I think the most challenging part was before getting diagnosed and just struggling internally wondering why I felt terrible and looked terrible. I blamed myself a lot and felt so much shame. I was terrible to myself and drank alcohol as a way to cope. During diagnosis I was impatient and annoyed for having to take so many tests, spend money and wait what felt like long weeks until I got my results. The feeling of not knowing would eat me up inside for months.. When I got diagnosed, I accepted my fate and felt like a huge weight was lifted off my shoulders. I learned the lesson of patience and gratitude and how grateful I am for my doctor making me take all these tests. I started to tell myself that it was not my fault that I am sick. I gave up on fighting myself and decided to love myself more. I took a break from socializing and school since it was too stressful getting panic attacks in public. I told my family and friends but needed space so I took time off from everyone to just be on my own.
Q) What type of surgery did you have? When was it?
A) So after getting diagnosed, I worked with my endo to schedule surgery and find a surgeon. (Always work with your doctor to find the best treatment route for your situation) You basically can shop for the lowest price surgeon and choose who you want to perform your surgery. You can also contact NIH Cushing's research in Maryland if you want them to take on your case and sometimes they will offer help if you qualify for their Cushing's research. I found a surgeon named Dr. Suliburk and he has been experienced in doing tumor removal for Cushing's patients. He performed a Adrenalectomy and removed my whole right adrenal gland since removing the whole gland guarantees the tumor will not come back. It was performed May 8th, 2013
you can read about it here: My adrenalectomy
Q) How did you feel Post Op?
A) I felt nauseous and like someone punched me 1000 times in the stomache. Hard to eat due to nausea a few days and still very swollen since they injected me with more steroids just in case my body goes into shock from having no cortisol in my body. I was sad and disappointed because I had no patience in myself. I felt worse and wondered when I would start feeling and seeing improvement.
Q) How long til you Recovered from Post Op?
A) I was in the hospital for 3 days because I had some bladder issues that needed to be resolved before they could release me. Day 1 was hard to walk or eat. Day 2 I walked and ate a little bit still very nauseous. and when I was released from hospital I was at home laying around eating soup About 2 weeks I started to feel better and 8 weeks my wounds healed and I went swimming. I tried to walk 15 minutes daily and had bouts of nausea throughout. So healing from surgery is easy part, recovering from Cushing's is the hard part..
Q) How long til you recovered from Cushing's Disease?
A) Approximately 18 months til my remaining adrenal gland started producing cortisol again
Q) What was your Recovery like? How was your Adrenal Insufficiency?
A) Very challenging.The first 2 weeks post op I could not do anything because I would feel dizzy, nauseous and want to faint. I started off on hormone replacement therapy with 30mg of hydrocortisone to supplement for morning and afternoon. If I missed a dose, I would feel terrible and start showing signs of a adrenal crisis aka my body shutting down from no cortisol hormone.. I also tried to cut down my steroids too soon and had a adrenal crisis filled with faintness and trembling. I had night sweats and loss of appetite. My depression felt more severe and I cried often. I no longer had the moods associated with Cushing's but I was always just very sad and had low energy.. I had highs and lows throughout and til this day I still have side effects of fatigue some, acne scars, tiredness, irregular periods, low moods.
Q) You seem to recover fast, When did you notice symptom improvements during recovery?
A) Trust me when I say I did not recover fast! Doctors said I was not extremely overweight because I also was an athlete most of my life, young and was on a strict diet for years prior to getting diagnosed so I had more muscle mass and bounced back easier. but it took me a full 2 years to fully recover. The first 3 weeks I noticed my moon face was shrinking. At 3 months there was a huge improvement on my moonface and I started seeing weight loss. At 6 months I started to look like myself and had more energy and adapted to adrenal insufficiency and was at my lowest weight since highschool. In one year my depression and anxiety improved but still had not gone away. My insomnia improved and I started taking naps which I never did before. My period returned even though still irregular I got it every 3 months or so. started getting restful sleep. Joint pains still happened but mainly during the cold. In 1.5 year Muscle mass increased. I continued school and started socializing. Acne was gone, had severe scarring. Hair growth started. Blood pressure improved. fatigue was improved. Better moods. less hirstutism aka body hair, it literally just become thinner and less noticeable. My allergies returned which is suppose to be a good thing since cushing's suppressed it for a very long time. Increased energy. Everything improved all the way until the 2 year mark was when I felt almost fully like a better version of myself.
Q) How did you cope during recovery
A) As hard as it seems, you have to be nice and love yourself. You have to avoid stressful situations at all cost. Cut out all the negative people in your life who are neither supportive, encouraging or too selfish and only looking out for themselves. Don't let bullies get you down. If people talk shit to you or put you down, that means they are an ignorant ass hole for putting down a sick person. Surround yourself with supportive people even if that circle is very small. Animals help you feel better by offering unconditional love. Remind yourself that even though you feel terrible, there will be lots of highs and lows during recovery. nothing worth having comes easy. Be patient, laugh often, watch funny movies, do things you enjoy. You don't have to be okay for anyone just do what makes you feel good. People don't have to "get it" so don't waste your time proving anything to anyone. Take lots of progress pictures and compare before and after pictures to see how much better you are and it helps remind you that you are getting better. Try to sleep and drink lots of water and eat your vitamins. You will have bad days lots of bad days but as time goes by you will have more good days and it will start to feel consistently good. Don't get in the way of yourself and Let yourself heal.
Q) How did you taper/ wean off steroids (hydrocortisone)
A) SLOWLY and small increments being tapered off. I was on hormone replacement therapy on Hydrocortisone. I started at 30mg and after a month I went to 25mg then another 3 months I went to 20mg then another few months I went to 15mg. At 15mg was where i struggled to lower the dose and started feeling very sick with adrenal insufficiency. So I stayed there for a while and during my last 6 months before I recovered, I went down to 10mg then at 5mg was when my remaining adrenal gland woke up and started producing low amounts of cortisol. Still I was taking hydro on and off when my levels felt too low. I still feel like I have low cortisol days but I try to adapt without the use of steroids now.
Q) You look skinny, Did you go on a diet/ exercise routine?
A) I may look skinny but I still have belly fat which I do a good job of concealing in clothes and photos but my stomach and overall body fat has decreased greatly. I did not diet post op but did lose a lot of bloating, water weight and fat overall since I was no longer producing high amounts of cortisol and was adrenal insufficient. I ate whatever I wanted however I had loss of appetite so did not eat big portions. I also took 15 min walks everyday and slowly worked into 30 min walks. As a past athlete, I no longer have any stamina or endurance so I don't really do high strenuous/high impact activities like running. Maybe eventually I will train my endurance again. Also in my previous answer, I had more muscle mass than the typical cushie and my doctor credits it to youth, healthy eating, exercise and being an athletic most of my life. So I did not gain as much weight during my sickness I was about 20-25lbs overweight. Now I go for hour long walks my dogs, go to the gym twice a week mostly weight training. And though I am not eating the healthiest diet right now I avoid sugar on weekdays carbs and try to cut back calories when I over indulge the day before. I think portion control and watching sugar is the most important thing for me. But everyone is different so do what works best for you and make sure everything is in balance.
Q)What can your friends, family or spouse do?
A) Before I was diagnosed, I felt like I was being misunderstood often and was judged for how I looked and my anxiety ridden behavior. Friends said I was acting weird and sometimes gave me weird looks as if they were trying to figure out what was wrong with me, some family members called me fat, my aunts and grandma tried to give me advice on how they cured their acne. They even started making theories of why I got sick. All of that stuff really adds up stress and made me feel ashamed and I would react by anger, having panic attacks or feeling more depressed. Once I did get diagnosed, it seemed that everyone started to be a lot kinder to me but at the same time they still had to give me advice on how to be... I told most of them I needed my space and to support me if they wanted to but don't tell me what I should be doing to help "fix" myself. The only person who was very supportive to me was my boyfriend. At first we fought a lot because he didn't understand my issues but he became a full time care taker once I was diagnosed. I know being the spouse or caretaker is not easy. And So I asked my small support system what they want other spouse, family or friends to know, in their words they said, "to have your caretaker/spouse/family be educated on your condition and be very patient with the recovery. There will be times that its too much but understand you cannot break down. You have to be strong for them and support them til they recover. Be positive in the recovery and don't be negative. If you see signs of a negative enviroment or people remove your loved one away from it. Seek help to those who will support not criticize every decision you make."
I am very thankful that my support system decided to stick around and be my rock and shoulder to cry on. They were selfless and now we have gotten through this hurdle together. Now our relationships has gotten better and we thrive on new experiences together. They would not have changed a thing and were glad they stuck around through the bad times so now we can have great times together. They are shocked of how well things turned out and even how much my physical/psychiatric improvements progressed in recovery.
Q) So after all that happened, How do you feel today?
A) Overall I feel great. I am back to living a fuller life. I still have days of low energy and other non related health issues but the most important thing is that I have my mental clarity back so I cope with problems much better. I have come to terms with all the loss and grief I felt during my sick cushie days. I learned many lessons and have gotten stronger as a human being. I have more compassion for others and find much fulfillment making others feel better with beauty, health, cushie advice, blogging, and being positive. I learned to be more patient in life and that nothing is always what it seems. I judge less and embrace every soul that comes into my life. I am grateful to have been through this journey and met some awesome cushies and new people along the way. I want to thank all the recovered cushie patients who shared their story, replied to my emails and helped me during my time of struggle. The reason I am so public about my journey is because I have a theory that this disease isn't so rare and more people have it that are going undiagnosed because it's still a mystery and unknown. Thank you guys for reaching out and telling me your story and using me as a tool in your journey. I will always be here to talk and help you go through whatever struggle you are going through. I have been through it and know you are not alone.
Q) Do you have any other advice?
A) As far as those having trouble getting a doctor to listen, make a list of your symptoms. Show them a photo of how you looked when you were healthy so they have a point of reference and can visually see how your features changed. Never take no for an answer and keep fighting for your health. Get second opinions if the first doctor is not being useful. Find the root cause of your health issues. Find a endocrinologist with experience with Cushing's patients. Also I always remind others to take lots of progress photos to remind yourself you are recovering. Remember always that there will be bad days and good days ahead but you will get better. Also remind yourself of the the things you'll be able to do once you recover. Plan a trip, go to the beach, train for a marathon, start a hobby, do something you've always wanted to do but was afraid to. Be kind to yourself and do not blame yourself for anything. Let go of anything you have been holding onto that hurts you. Forgive yourself and others. Don't be ashamed of being sick. I didn't know then but during all of my hard times were the times I had the most personal growth that helps me cope with life better today. Embrace the whole process and keep looking forward.
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| Follow me on Instagram |
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| My severe Cystic acne. I have a blog post about acne in 2014 archives |
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| The right pic was when I was about 15 months into recovery still adrenal insufficient and lost alot of weight/muscle |
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| Me Today! :) |
Tuesday, January 26, 2016
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.
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.
Friday, June 26, 2015
Health Update
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.
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| My handy kitty period tracker! |
Tuesday, March 3, 2015
Fading Acne Scars & My ACTH Stimulation Test
So lately I have been feeling extremely tired and sleeping more often. I also have been still getting the dizzy spells. I called my endo and she suspected that I might need to get back on Steroids so she scheduled me for a ACTH and adrenal stimulation test. The test was about an hour long. At first the nurse attached an IV to me and drew blood from me. Then she injected me with some synthetic ACTH medicine to stimulate the production of cortisol. Sorry I am not sure what the medicine is called. Then I had another blood draw at 30 mins. Then another blood draw at 60 mins. The results came in and just like what we suspected, my cortisol levels are still very low. My baseline cortisol was 8. When I was stimulated with the meds it only increased to 12. And in 60 mins it went back down again. My doctor explained that it should have been stimulated to atleast double or triple the amount to function like the average person. This is all really confusing information So I will put down a web explanation but basically I am back to supplementing steroids again. I didn't pass the test with flying colors but I am making something!
HOW I FADE MY ACNE SCARS
If you have had acne, you would know how hard it is to face the world with blemishes on your face. Especially for those who suffer from cystic acne like I did. Since the surgery, the breakouts have subsided slowly but what is left is just as bad. Acne scars.. The acne scars are allover my face. I have all kinds from the red scars, purple, brown to the bumps, keloids, and ice pick scars. There's so many scar names but I pretty much had it all. So even though I no longer had active acne, I still would hide my face from the world and have to wear heavy makeup to disguise all the scars. Like if you looked at me in the sunlight, you would see all these little holes and bumps on my skin and it looked so bad. I was very insecure about it, I would even wear foundation around the house with my family members. I did not think that I would ever be able to show my bare face ever again.
Well the past few months I have been testing different ways and products to help with the scarring. Some worked a bit and some was useless. So I researched acne scar solutions and found a good Diy recipe that has helped my acne scarring fade tremendously. I mix these ingredients and slather in on my face for 20mins every night. Here is the recipe:
The results for the mask has been very positive. My skin has been improving weekly. A few weeks ago I was at my local store and saw that this cream was on sale so on a whim I decided to purchase it. It is called Garnier Skin Renew dark spot corrector. I decided to try it out. And WOW it just heightened the acne fading so much quicker. I instantly saw results and last night my boyfriend and little sister told me that my skin looked so clear and bright. My boyfriend told me I should forgo foundation all together. I am so thrilled to get these skin compliments!! So remember that new scars fade faster than really old scars so you have to be consistent and patient. So this is the cream I am talking about and I will put some progress pictures here:
Disclaimer: This is not a sponsored review. This was what worked for me. Everyone has different skin and will react differently to products and ingredients. Test your skin to make sure you are not allergic.
If you have had acne, you would know how hard it is to face the world with blemishes on your face. Especially for those who suffer from cystic acne like I did. Since the surgery, the breakouts have subsided slowly but what is left is just as bad. Acne scars.. The acne scars are allover my face. I have all kinds from the red scars, purple, brown to the bumps, keloids, and ice pick scars. There's so many scar names but I pretty much had it all. So even though I no longer had active acne, I still would hide my face from the world and have to wear heavy makeup to disguise all the scars. Like if you looked at me in the sunlight, you would see all these little holes and bumps on my skin and it looked so bad. I was very insecure about it, I would even wear foundation around the house with my family members. I did not think that I would ever be able to show my bare face ever again.
Well the past few months I have been testing different ways and products to help with the scarring. Some worked a bit and some was useless. So I researched acne scar solutions and found a good Diy recipe that has helped my acne scarring fade tremendously. I mix these ingredients and slather in on my face for 20mins every night. Here is the recipe:
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| Burning face mask Ingredients I don't use the nutmeg (the name is scary but it tingles) |
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| Use honey as the base and add a squeeze of lemon and sprinkle cinnamon (I don't use nutmeg) |
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| Burning face mask with the girls and yogurt face mask (alternate days) |
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| ^I prefer the cream |
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| My Cystic Acne From Cushing's Syndrome in 2013 ='( |
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| no makeup!! >.< |
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| #NoFilter Wearing face powder and eye makeup >.^ |
Saturday, January 31, 2015
Update Fully Tapered Off Steroids (PICS) and MORE!
Hi guys! I apologize for not updating in so long but don't worry I am still very active in responding to my emails, youtube(onedelicateheart), and instagram(1delicateheart). Ever since coming back from the New Jersey trip I have gotten so many emails and messages from Cushies and people who are in the diagnosing process. So feel free to contact me from those various social medias. Best way to get a quick response is to email me at yumnguyen07@yahoo.com
If you guys haven't checked out Rachel and Rae's website cushingstories.com then you better go and check it out now. I am so proud of these ladies for doing so a huge thing for our cushie community. There are stories, contacts, and videos for you to learn more about. Please share <3
So I have big news! I have fully weaned of steroids for 3 weeks! My doctor told me that my left adrenal gland has woken up. It is functioning at a low level so my adrenal gland is not producing like the normal average person but my body has adapted to the low levels so I decided to quickly taper off the rest of the hydrocortisone (Cortef) because let's face it, it is a pain in the ass to take and still felt bloated from small amounts! Well, how am I feeling? I feel almost perfect. Like I am 97% there. There are times I notice the change in energy and feel great then sometimes I feel lethargic and faint due to the fact that I have used up the little amount of cortisol reserve that I produce but nothing that I have not already been through and it is bearable. I still get very faint often but I think I need to start eating a diet that supports the hypoglycemia issue. And of course how do I look? Well here are some photos for you guys to see =]
These pictures are all post op and recovery. and no I did not get facial surgery during recovery, it's just really good makeup tricks I started learning that I want to share to you all soon! But now Here is the breakdown of my recovery. This is not the most organized list sorry! lol
6 Month Post OP: moon face was shrinking, acne growth stalled, skin got a bit drier, still bloated, face still felt heavy (hard to smile or open eyes wide), droopy skin, reddish orange skin, no hair growth, depression, anxiety, nausea, hello collarbones! dry eyes, adrenal insuffiency was at it's worse due to tapering. high bp but pre diabetes was gone. Sleeping all the time. Lazy, no motivation. panic attacks. Crying all the damn time.
10 Month: Face continued to shrink, features feminizing (eyes and lips look more pretty??), smiling is easier but still felt like cheeks were heavy, acne fully stopped, skin healing, hair growth (baby hair halo) not so healthy looking though crinkly hair texture, period was back (still irregular), buffalo hump shrinking, itchy dry skin to the point I can't sleep, body adapting to adrenal insuffiency, acne scars, less depressed, up and down emotions and mood, nausea, faint, period still irregular. Insomnia. undereye bags circles. Panic feelings, no attacks.
12 Month: I have to say I felt much happier after a year since the surgery, My face is almost back to normal, features are slowly defining, smiling is easy, hair is starting to regrow fuller but texture is still crinkly, no more acne problems, super duper dry skin, less crying, less stressed, I notice myself being funny and enjoying life like never before, began socializing again, face dimple is starting to show, jawline, cheekbones and nose looking slimmer. less nausea, Less paranoid. Insomnia. Doing normal activities. Shopping addiction due to weight loss and increased confidence LOL
14 Month: period came back regularly (feeling prettier after every menstrual cycle), skin is glowing, reddish orange skin fading, acne scars healing, less hair fall, wondering if this was as good as it gets??, face features more defined. fainting, low bp, dizzy, Mood is pretty stable but I still will get cranky when I being weaning off more steroids, more confident, no more sadness and resentment in my heart.. I literally woke up one day feeling like all the bad stuff and people in the past did not affect me anymore. Truly a miracle. Is this it? Will it get better? Sleep is up and down.
16 Months: face is back to normal, dimple is fully visible, jawline is chiseled, sleeping more, period is irregular again (due to low amount of steroids?), hair is healthier and shinier better texture, acne scars are less visible, night sweats, fainting, dizzy, extreme low bp (good thing? idk), satisfied with how i look but still worried if I still would have the highs and lows of moods and dizziness.
18 Month (fully off steroids): Face got even smaller less bloated (yeah I didn't know that was possible), I can now even smile with my teeth effortlessly, skin fully healed, scars are not as visible, I feel confident enough to go makeup free while running errands, people complimenting me, strangers think I am younger than my age, my mom says I look like I did back as a senior in Highschool! Thanks mom. Still faint and dizzy, no more obsessive thoughts, no more paranoia, no more guilt, anxiety, or shame, no more negative feelings. Mind is at peace, skin still dry, period still irregular but still coming, facial features look lifted, eyes are brighter, eyes are less dry, feeling motivated, not afraid of speaking my mind. No more panic attacks! Still food sensitive. No more waking up at 9am to take Cortef yay!
My body Recovered:
Less joint pains, muscles are starting to look more defined with little exercise around month 9 post op, no dieting, appetite is normal. No more feelings of being ravenous with food, body is getting a more feminine curvier shape, fat is relocating to where it should be instead of on my stomach, buffalo hump gone. I can feel my spine, collar bones, less body and facial hair, more hair on head lol... no more orange hands, still food sensitive to salt, sugar, and MSG. Can drink coffee without panic attacks. Can lightly workout and lift light weights with less muscle pain. Still cannot run or do any hardcore exercise training (not that I ever want to again). more flexible. no more bloating in weird places. More active. Feet shrank 1 size down (size 7 to 6-5.5), no more rapid hearbeats. Feels like I can breathe again. The heavy brick feeling on my chest is gone yay! Digestion is greatly improved.
That is all I can think of right now. I am thrilled that my future is filled with more optimism. I am glad that majority of the stuff is reversible. I am still stuck with a few minor health nuisances that Cushing's affected. I really don't think it is going to ever get me down because everything that I prayed for I have been given by God and the Universe. This whole experience really shaped me to become who I am now. I am stronger and humbled than I was ever before getting sick. I am glad that I got to meet so many people and understand the struggle of getting everything taken away from me. I learned the lesson of compassion, patience, and gratitude. I will continue to advocate for Cushing's and rare diseases. So I will always come back to blog and update my life. I also want to be more active on my youtube channel and posts some videos of me talking about various Cushie subjects and giving advice to Cushie patients and also post my beauty tips and tricks and also my health regimen. I just need to get over my fear of talking to a video camera lol. Thank you guys for reading this post and supporting me through this journey. I will never forget. Much love!
If you guys haven't checked out Rachel and Rae's website cushingstories.com then you better go and check it out now. I am so proud of these ladies for doing so a huge thing for our cushie community. There are stories, contacts, and videos for you to learn more about. Please share <3
So I have big news! I have fully weaned of steroids for 3 weeks! My doctor told me that my left adrenal gland has woken up. It is functioning at a low level so my adrenal gland is not producing like the normal average person but my body has adapted to the low levels so I decided to quickly taper off the rest of the hydrocortisone (Cortef) because let's face it, it is a pain in the ass to take and still felt bloated from small amounts! Well, how am I feeling? I feel almost perfect. Like I am 97% there. There are times I notice the change in energy and feel great then sometimes I feel lethargic and faint due to the fact that I have used up the little amount of cortisol reserve that I produce but nothing that I have not already been through and it is bearable. I still get very faint often but I think I need to start eating a diet that supports the hypoglycemia issue. And of course how do I look? Well here are some photos for you guys to see =]
6 Month Post OP: moon face was shrinking, acne growth stalled, skin got a bit drier, still bloated, face still felt heavy (hard to smile or open eyes wide), droopy skin, reddish orange skin, no hair growth, depression, anxiety, nausea, hello collarbones! dry eyes, adrenal insuffiency was at it's worse due to tapering. high bp but pre diabetes was gone. Sleeping all the time. Lazy, no motivation. panic attacks. Crying all the damn time.
10 Month: Face continued to shrink, features feminizing (eyes and lips look more pretty??), smiling is easier but still felt like cheeks were heavy, acne fully stopped, skin healing, hair growth (baby hair halo) not so healthy looking though crinkly hair texture, period was back (still irregular), buffalo hump shrinking, itchy dry skin to the point I can't sleep, body adapting to adrenal insuffiency, acne scars, less depressed, up and down emotions and mood, nausea, faint, period still irregular. Insomnia. undereye bags circles. Panic feelings, no attacks.
12 Month: I have to say I felt much happier after a year since the surgery, My face is almost back to normal, features are slowly defining, smiling is easy, hair is starting to regrow fuller but texture is still crinkly, no more acne problems, super duper dry skin, less crying, less stressed, I notice myself being funny and enjoying life like never before, began socializing again, face dimple is starting to show, jawline, cheekbones and nose looking slimmer. less nausea, Less paranoid. Insomnia. Doing normal activities. Shopping addiction due to weight loss and increased confidence LOL
14 Month: period came back regularly (feeling prettier after every menstrual cycle), skin is glowing, reddish orange skin fading, acne scars healing, less hair fall, wondering if this was as good as it gets??, face features more defined. fainting, low bp, dizzy, Mood is pretty stable but I still will get cranky when I being weaning off more steroids, more confident, no more sadness and resentment in my heart.. I literally woke up one day feeling like all the bad stuff and people in the past did not affect me anymore. Truly a miracle. Is this it? Will it get better? Sleep is up and down.
16 Months: face is back to normal, dimple is fully visible, jawline is chiseled, sleeping more, period is irregular again (due to low amount of steroids?), hair is healthier and shinier better texture, acne scars are less visible, night sweats, fainting, dizzy, extreme low bp (good thing? idk), satisfied with how i look but still worried if I still would have the highs and lows of moods and dizziness.
18 Month (fully off steroids): Face got even smaller less bloated (yeah I didn't know that was possible), I can now even smile with my teeth effortlessly, skin fully healed, scars are not as visible, I feel confident enough to go makeup free while running errands, people complimenting me, strangers think I am younger than my age, my mom says I look like I did back as a senior in Highschool! Thanks mom. Still faint and dizzy, no more obsessive thoughts, no more paranoia, no more guilt, anxiety, or shame, no more negative feelings. Mind is at peace, skin still dry, period still irregular but still coming, facial features look lifted, eyes are brighter, eyes are less dry, feeling motivated, not afraid of speaking my mind. No more panic attacks! Still food sensitive. No more waking up at 9am to take Cortef yay!
Less joint pains, muscles are starting to look more defined with little exercise around month 9 post op, no dieting, appetite is normal. No more feelings of being ravenous with food, body is getting a more feminine curvier shape, fat is relocating to where it should be instead of on my stomach, buffalo hump gone. I can feel my spine, collar bones, less body and facial hair, more hair on head lol... no more orange hands, still food sensitive to salt, sugar, and MSG. Can drink coffee without panic attacks. Can lightly workout and lift light weights with less muscle pain. Still cannot run or do any hardcore exercise training (not that I ever want to again). more flexible. no more bloating in weird places. More active. Feet shrank 1 size down (size 7 to 6-5.5), no more rapid hearbeats. Feels like I can breathe again. The heavy brick feeling on my chest is gone yay! Digestion is greatly improved.
That is all I can think of right now. I am thrilled that my future is filled with more optimism. I am glad that majority of the stuff is reversible. I am still stuck with a few minor health nuisances that Cushing's affected. I really don't think it is going to ever get me down because everything that I prayed for I have been given by God and the Universe. This whole experience really shaped me to become who I am now. I am stronger and humbled than I was ever before getting sick. I am glad that I got to meet so many people and understand the struggle of getting everything taken away from me. I learned the lesson of compassion, patience, and gratitude. I will continue to advocate for Cushing's and rare diseases. So I will always come back to blog and update my life. I also want to be more active on my youtube channel and posts some videos of me talking about various Cushie subjects and giving advice to Cushie patients and also post my beauty tips and tricks and also my health regimen. I just need to get over my fear of talking to a video camera lol. Thank you guys for reading this post and supporting me through this journey. I will never forget. Much love!
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Before and After |
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| add me on Instagram! |
Saturday, December 13, 2014
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
Our comparison charts are rated from 0(none)-10(worse)
If you have a chance please check out 2cushiegirls.blogspot.com
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| PLEASE CLICK ON EACH PICTURE IF YOU WANT TO ZOOM IN |
Wednesday, October 22, 2014
My Experience At The Cushing's Advisory Board In New Jersey and NYC Trip
Just came back from the New Jersey and NYC trip and I sure have lots to
talk about! I got to meet some amazing people and it was a memorable
trip I will never forget. I'll start off by talking about the New Jersey
Cushing's Advisory board experience and then I will put some photos
below. What I learned during the Cushing's Online influencer advisory
board was how our common goal of raising awareness for the disease got
us all together in that room. Each Cushie that I got to meet were so brave and taught me valuable lessons from their strength. I learned about the heart of the company at Novartis and how much they do want to learn more about Cushing's patients and the patient's side of the story. Our opinions do matter and someone does care. Now how do we get the world to care and be aware? I also learned more about Signifor, the drug from Novartis that may help to shrink the tumor. I have no used it but there are always people who cannot have surgery that may want to see it as an option. Novartis also has created a program called PEAK that is a personalized support program dedicated to helping the cushie patient in their journey. All very useful tools that I wish I had when I was sick. I am happy to share the information and I think I will write another blog about all of what NOVARTIS offers and post some cool handouts I got from them.
I got to meet many women who struggle with Cushing's and hear their story. We got to discuss about improving social media and efforts to get the disease to be recognized. I learned that regardless of how we feel towards the disease, the more we shine the light on Cushing's the better. During the meeting, I got a chance to understand everyone's point of view on the disease. What matters is that it is our own journey that brought us together and no matter how we put it out there to the world, we are still raising awareness. It just happens to be in our own way. Cushing's is very much debilitating and I want the world to see that and maybe for them to want to learn more about it. I understand we are not victims but survivors but everyone has their own progress that they have to make within them self. We are evolving, learning and growing from what had happen to us. I want to thank the company Novartis and the kind people behind the scenes. They were non judgemental, had a clear message of how the point of view of Cushing's, curious to learn more about the patient's, and were accommodating to our needs. This trip has changed me and I am now more inspired to advocate for Cushing's disease/ syndrome.
When I think about how grateful I am about the gifts that Cushing's gave me. I use to think that it will somehow make me a better person, teach me patience and that I am lucky to get diagnosed so quick and be able to bounce back from it. But now I would say my gratitude and blessings have multiplied.. The lessons taught me to have the capacity to have compassion for those who struggle. To not judge anyone by how they act or what their journey is. Not to judge people by their looks or even my own. To look past the symptoms and to look deeper. To have opportunities to raise awareness and learn more. To be able to meet those with big hearts and to have a voice in the community. And the most valuable to me is that I got to meet a wonderful girl who said that my videos helped her in her struggle. To everyone who has contacted me, or replied to me..you give me meaning to my purpose in life. And now I realize how valuable these blessings are. I use to complain that nobody understood me and I was tired of being judged, I wanted friends who I can relate to and now I see the wonderful supportive people around me, the people who stayed with me at my worst, and the new cushies that I know will be friends for life. I give my gratitude to the Cushies who are brave enough to share their story. The ones who helped me through my hard times and the ones who are helping others now. God has blessed my life. I am only paying it forward by doing my share of advocating. Let us continue to do this together. Sorry if this blog entry is allover the place but I am just trying to write it all down before I have a brain freeze. Here are lots of pictures from the trip.
Disclaimer:
Novartis provided me with information and paid for travel, accommodations and meals during our time together.
And this is when we arrived to New York City
I never thought that I would want to go to NYC for some reason it never was on my to do list (even though I LOVE the show Friends and Sex and the City) but the minute we arrived my opinion changed of the City. There was so much to do, see, walk, entertainment, shows, food was at every corner and so was shopping. Like literally every store had atleast the minimum of 3 stories. Every street seemed to have an H&M. I think we went into a macy's with 10 floors and 5 starbucks inside! Pizza and Hotdogs everywhere! It was dirty and chaotic but some how everything seemed to flow together. The crowds weave around each other. There was rich and poor folks walking the same area with no kind of judgement since they are in a rush to go somewhere. People seemed to mind their own business. There were beautiful off duty models every where you looked eating, shopping, walking. There were hobos picking trash in the pizza joint and nobody cared. Guys walking the streets with furcoats and daisy dukes. It was just a good mixture of crowd and it seemed like anything goes.We missed our last bus so we were freaking out but this random man pops up out of nowhere to help and then disappeared. Thank you random man! I really felt relaxed in the chaos and there was something that soothed my anxiety. I am sure I felt like that because I was also on Vacation I don't think I could deal with it as a daily residency. But the trip to New York City has changed my outlook on the place. I think it was one of the best trips compared to the others i've taken in the past. I can't wait to come back. I'm going to say it, I love New York!
I got to meet many women who struggle with Cushing's and hear their story. We got to discuss about improving social media and efforts to get the disease to be recognized. I learned that regardless of how we feel towards the disease, the more we shine the light on Cushing's the better. During the meeting, I got a chance to understand everyone's point of view on the disease. What matters is that it is our own journey that brought us together and no matter how we put it out there to the world, we are still raising awareness. It just happens to be in our own way. Cushing's is very much debilitating and I want the world to see that and maybe for them to want to learn more about it. I understand we are not victims but survivors but everyone has their own progress that they have to make within them self. We are evolving, learning and growing from what had happen to us. I want to thank the company Novartis and the kind people behind the scenes. They were non judgemental, had a clear message of how the point of view of Cushing's, curious to learn more about the patient's, and were accommodating to our needs. This trip has changed me and I am now more inspired to advocate for Cushing's disease/ syndrome.
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| Courageous Cushies and Novartis |
Disclaimer:
Novartis provided me with information and paid for travel, accommodations and meals during our time together.
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| An honor to sit with Mary O'Connor founder of cushings-help.com |
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| Love these ladies and gents all amazing and have a great story |
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| View from Shorthills NJ |
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| Hiltons in Shorthills NJ |
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| Rae gives me life ^.^ |
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| The sweet Alicia |
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| Felt VIP for a few days thanks to Novartis :) |
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| View from Empire State |
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| Time square -- look at the huge Toys R us!! |
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| Puss and Boots sensed my Cat sweater |
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| The lights really got me ha! |
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| Top of the Empire State was beautiful |
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| Traffic |
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| Flashy signs |
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| Messin around in Toys R us |
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| MIDNIGHT SHOPPING! There was 5 Forever 21 and 10 H&M at every corner!! |
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| F21 Taxi The stores all have multiple levels and stay open til 2am!!! |
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| My plaid kitty outfit. Too bad I had to change because it was too cold! |
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| Brooklyn Bagels were legit!! |
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| Donut Plant PBJ donut |
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| Smoked Salmon cream cheese bagel |
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| Ground Zero 9/11 memorial was so emotional to be there |
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| On the Skyline "highline" was a long skyline on top of buildings you can walk |
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| Top of the skyline chillin |
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| Before our life changed when we discovered Century21 LOL |
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| Beautiful yet chaotic |
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| The crowds |
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| Hi Tom Cruise!! |
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| A taste of Asia |
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| Outdoor Vendors |
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| Cute spot |
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| Pastries at Ferrara!! |
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| It was so cold walking around we had to stop for wine to warm up and relax our feet! |
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| Drunk in Timesquare :) |
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| Gansvoort Market super fresh! |
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| Taking in the beautiful scene |
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| Is this where the Impractical Jokers hangout??? I was looking for Sal Vulcano! |
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| View from central Park |
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| Testing the Gopro |
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| I was eating & looked up to see Jessica Alba was here! |
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| Yummy all mine! |
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| Sarah Jessica Parker and Conan!! |
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| Drunk shopping at another H&M lol |
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| Ipuddo! The lines are crazy long but we beat the crowd for early breakfast |
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| Pork Belly Bao is TDF!!! |
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| Before my Ramen life changes >.< |
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| I don't know how they made that pork belly but it was so tasty and melts in your mouth |
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| Don't get the cha chaa if you are not hungry |
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| Central Park |
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| Central Park View |
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| Beard Papa's Cream Puffs!! |
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| The best Cream puffs EVER |
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| Cream puff stealer! |
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| Mochi's |
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| Brought some home to enjoy |
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| Last Day |
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