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 cushings. Show all posts
Showing posts with label cushings. 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 :)
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, July 22, 2014
Does Your Pet Have CD??? My New Strange Symptoms
I saw a picture of this poor pup on a cushing's blog and it broke my heart. The blog claims he has CD but I can't find much more information on him.
If you see unusual changes in your dogs appearance (swelling, obesity, agressive behavior, hair changes) much like a human cushing's patient, I encourage that you investigate your dog to rule out any health conditions. The bulldog above looks like a very extreme case but who knows what other condition he had and just like us, we all react differently to the disease but I sure as hell felt as swollen as the dog when I was sick. I think in researching animal/canine cases is that the potbelly is very visible and the fur coat looks abnormal. (most horses have the crinkled hair.) It makes me sad that many get euthanize or suffer silently never going noticed since they cannot talk to us or even complain. Please watch out for our little angels.
So I've been quite busy moving and for the past 2 weeks have been over exerting my energy. I am on a higher dosage since my last failed attempt to taper/wean. So far I was feeling okay until last week, ive been feeling nauseous/dizzy/headache combo everyday. At first it feels minor but when it persists for days, it starts to feel too intense. Yesterday I was in a electronic store and just felt like vomiting though I couldn't on an empty stomach and had to be dragged out and laid curled up the whole way home. Everything can trigger it from smells, lighting, temperature or being active. I've also been having a pins and needle feelings on my hands, arms, legs and feet. At first I thought it was a insect biting me but at a closer speculation I notice it's a vein or just some kind of nerve prick. It's happening frequently and is quite bothersome. I can have the sensation on multiple parts simultaneously. I don't know why I am having these symptoms, if anyone has an idea please inform me. I am just at a point where I am tired that there is still no ending to these health issues. Maybe there's still something underlying that needs to be addressed? I just hope I can find a resolution and find some peace in my body.
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| Pot belly in cushing's dog |
Thursday, June 26, 2014
Tapering Steroids+ Adrenal Insuffiency= Me Fainting
HORMONES AFFECT EVERYTHING. Long ass entry today =]
Two weeks ago my doctor told me I need to try to lower my steroid dosage as the less I have in my system, the more likely my pituitary and adrenals will realize they need to start working again. If I don't feel well then to up the dosage to something that makes me feel a bit normal. I went from 15mg to 10mg and boy does it make me feel sick. Who would think that this little difference would make such a huge impact to my overall health. So far since tapering, I have had a sinus infection which was so horrible I have never had one of those in my life. A cold and sore throat. And then now I am having lady problems and stomach aches. I went to see the doctor and they told me that my pap smear exam was abnormal and want to do further testing for infection.. Oh yeah not to mention I fainted twice this week.
The feeling of Adrenal Insufficiency is that the longer you go having it, the worse it feels for your body to have to do the work without the help of it's sister glands functioning. I have a dull headache, bad allergies, a terrible feeling of nausea that lasts all day. It feels like one minute I think I am feeling better then boom like clockwork I feel like I was punched in the face with the nausea. I feel dizzy. There is numbness and tingling that come and go on my limbs. My heart feels like it is working extra hard to beat. And overall I feel a sense of lethargy, tiredness, and worn down. Oh yeah not to mention my face is so tired that my under eyes look like black panda eyes since tapering.
Today while I was trying to make some icecream, I blacked out in the kitchen. At first I felt the tingles on my face and fingers. Then turned into numbness all over. I couldn't breathe. I felt a heavy pressure on my head that traveled down to my legs and my legs couldn't hold my body up I just fell. I have been fighting the fainting since tapering. Ever since the last incident a few months ago I've been scared. I feel the tingles when I am doing house work, when I drive, and even just standing up from laying or sitting. I try to not stand up quickly. I worry when it will happen next. I may be hovering the edge of a full blown crisis if I taper any lower.
In my head I think that the less steroids I take, the quicker I recover. That is not the case. You will only hurt yourself. So, as much as I want to taper down and continue progress. I feel like this is too much for my body to handle at this moment. I know that 15mg is the sweet spot but I think I need to perhaps just take it down a notch to 14mg and see how good it does me. I just want to let others preparing for recovery that it is best to taper slowly. You cannot jump from 30mg to 20mg and so on then think you are progressing because your body will notice the difference.
Nobody of normal health could tell you this because there is limited information about recovery but I am telling you. SLOW DOWN and let your body heal. Hormones affect everything and a recovered patient once told me that this is comes with the territory. Listen to your fellow cushies. You need the steroids to help your compromised immune system. I heard someone shaving their pills down a bit to slow taper. Now I think that is smart and what I should be doing. I really hope I will feel better when I increase the meds. Sometimes it just sucks, why us right? We get fucked by Cushing's then trade it for AI. But just remember all that you fought for. And all the progress you made. Atleast you are far away from the moonface and panic attacks. Just have a bit more patience.
Two weeks ago my doctor told me I need to try to lower my steroid dosage as the less I have in my system, the more likely my pituitary and adrenals will realize they need to start working again. If I don't feel well then to up the dosage to something that makes me feel a bit normal. I went from 15mg to 10mg and boy does it make me feel sick. Who would think that this little difference would make such a huge impact to my overall health. So far since tapering, I have had a sinus infection which was so horrible I have never had one of those in my life. A cold and sore throat. And then now I am having lady problems and stomach aches. I went to see the doctor and they told me that my pap smear exam was abnormal and want to do further testing for infection.. Oh yeah not to mention I fainted twice this week.
The feeling of Adrenal Insufficiency is that the longer you go having it, the worse it feels for your body to have to do the work without the help of it's sister glands functioning. I have a dull headache, bad allergies, a terrible feeling of nausea that lasts all day. It feels like one minute I think I am feeling better then boom like clockwork I feel like I was punched in the face with the nausea. I feel dizzy. There is numbness and tingling that come and go on my limbs. My heart feels like it is working extra hard to beat. And overall I feel a sense of lethargy, tiredness, and worn down. Oh yeah not to mention my face is so tired that my under eyes look like black panda eyes since tapering.
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| Excuse my complaining but let's keep it real here. I look different today? I just don't have any make up on! |
Today while I was trying to make some icecream, I blacked out in the kitchen. At first I felt the tingles on my face and fingers. Then turned into numbness all over. I couldn't breathe. I felt a heavy pressure on my head that traveled down to my legs and my legs couldn't hold my body up I just fell. I have been fighting the fainting since tapering. Ever since the last incident a few months ago I've been scared. I feel the tingles when I am doing house work, when I drive, and even just standing up from laying or sitting. I try to not stand up quickly. I worry when it will happen next. I may be hovering the edge of a full blown crisis if I taper any lower.
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| Adrenal Insufficiency =] |
In my head I think that the less steroids I take, the quicker I recover. That is not the case. You will only hurt yourself. So, as much as I want to taper down and continue progress. I feel like this is too much for my body to handle at this moment. I know that 15mg is the sweet spot but I think I need to perhaps just take it down a notch to 14mg and see how good it does me. I just want to let others preparing for recovery that it is best to taper slowly. You cannot jump from 30mg to 20mg and so on then think you are progressing because your body will notice the difference.
Nobody of normal health could tell you this because there is limited information about recovery but I am telling you. SLOW DOWN and let your body heal. Hormones affect everything and a recovered patient once told me that this is comes with the territory. Listen to your fellow cushies. You need the steroids to help your compromised immune system. I heard someone shaving their pills down a bit to slow taper. Now I think that is smart and what I should be doing. I really hope I will feel better when I increase the meds. Sometimes it just sucks, why us right? We get fucked by Cushing's then trade it for AI. But just remember all that you fought for. And all the progress you made. Atleast you are far away from the moonface and panic attacks. Just have a bit more patience.
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| ^Recognize the symptoms of a crisis^ |
Friday, June 20, 2014
WOMAN WITH CUSHING'S COMMITS SUICIDE
I can't seem to wrap my head around this. A woman who suffers from Cushing's Syndrome kills herself by jumping off her apartment building 3 days ago. Such a tragedy. My prayers go out to her and her family.
The story is featured at New York Post:
http://nypost.com/2014/06/19/pedestrian-almost-crushed-after-cancer-stricken-woman-leaps-to-her-death/
The story is featured at New York Post:
http://nypost.com/2014/06/19/pedestrian-almost-crushed-after-cancer-stricken-woman-leaps-to-her-death/
Saturday, June 7, 2014
Low Cortisol Level 1 Year Later =(
I thought I was making more cortisol but nope... As a matter of fact my cortisol levels went down from my test from 3 months ago. It looked as if my levels were raising up probably because of residual medications. I am wondering why it's taking my right adrenal such a long time to work? Oh well. It still explains alot of why I feel nauseous, weepy and fainty often.
Friday, May 23, 2014
My Sister and I were Diagnosed With Cushing's: MALE Cushing's patient
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| Meet Gabriel |
The year was 2007 I was age 16 I
woke up like any other day went and played some games with my friends. That
night, something happened. It began with a small pain in my side that grew
stronger and stronger we went to the hospital thinking it was appendicitis.
It wasn't after a few tests and the pain not going away they (doctors) were
stumped as to what it was. I stayed in the hospital for about three weeks getting
tests done and nothing was found the pain stayed the only thing that was
wrong was my level of cortisol was slightly elevated.
A few months went by and many doctor visits
later nothing was concluded. Doctors were doing random strange tests and
nothing. One doctor wanted to start treating me for Addison’s disease which
is the opposite for Cushings but they were on the right tracks. About a year went
by and test after test being negative I was diagnosed with Fibromyalgia my
body was exhausted and my mind was numb. After a year of testing to be told
nothing's wrong really made me sick. But like always, I moved on from it. I
rolled with it and I was treated for fibromyalgia with the help of sleep aid
and the knowledge of certain things that can trigger intense pain episodes.
Around the year of 2009 my sister was diagnosed
with a brain aneurism and had surgery. The doctors who were doing her tests
noticed a small link between mine and her results .She recovered from her
surgery. And began seeing an endocrinologist after a few months of testing
she was diagnosed with Cushings. During this time of her surgery and testings
I was trying to finish highschool and start college. The year was now 2011 I
was living my life with fybromyalgia but I began getting sick I remember
having an adrenaline rush and nearly passing out because of it something
wasn't right we were for sure of it. I began seeing my primary doctor letting
him know what was happening. I had weight gain, low immune system, blackouts
and pain. The doctor’s response was I was depressed. Cool story right.
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I sucked it up and dealt with it for another year. My
sister was diagnosed with Cushing’s and my parents noticed we had similar
symptoms and started and put two and two together. I made an appointment with
my sister’s endocrinologist and she noticed right away that something was
wrong. For me, I felt joy that someone was going to help. She noticed the
straie on my neck and underarms and jotted down my symptoms which included bone
pain, muscle weakness, excessive urination, thirst, fatigue, headaches, thin
skin, and bruising. I was text book
Cushing’s. They immediately started
testing me for Cushing’s. My first urine test was the worst they have ever
seen. My cortisol was sky high at a level over 70. Other family complications
that happened through the year put my treatment on hold. Meanwhile my sister
was able to participate in a cushings study with a medication that was new to
the market called Signifor, it was a daily injection that had the chances of
shrinking and stopping the growth of the tumor. After a year, her results were great;
she lost weight and looked healthy. I began going back to the doctor and had
more testing. My cortisol was really high around 60s. The levels made my body
constantly tired and sent my body into over drive. I did an MRI and Dxa scan. They
stuck a tube into my brain to see where the leak on the pituitary is. 3 months
later my results came back and the conclusion reached was that I had Cushings
Disease. I had multiple tumors but none were visible. That was why my body was
shooting out cortisol. My life flashed before my eyes. Years and years of waiting,
crying, and testing I finally had my answer. I got into the case study for CD.
I was the only guy
in my state to be diagnosed with CD at the age of 22 and my sister 19. We were
the talk of the town. Unfortunately testing requirements were very complicated
and I decided not to do the study and instead go for the medications. It took a
few months to get the medications since they were new and pricey. It was okay
to wait since I’ve been waiting for years. After 7 weeks I got my first order
of Signifor. I began taking the injections. The first injection made me vomit
and I continued to vomit after for two weeks. One morning I woke up smiling, I
no longer felt a lot pain in my body and my mind felt clear. I was on the road to recovery. After 2 months
of taking the medication I feel great. My mind is right; I still have pain for fibromyalgia.
I had my first adrenaline rush and didn’t pass out. My mental status is good I
have always stayed positive despite what has happened. I keep my mind away from
the depression. Now life is falling into place. The next thing I need to worry
about is what to do in life without wondering if tomorrow will be my last day
on this earth.
Thursday, May 22, 2014
Chasteberry (Vitex) Extract
During the time my menstrual cycle started becoming irregular, I tried many herbs to induce a period. Like literally all of the hormone balancing herbs. One herb did work for me, I read online that Chasteberry (vitex) extract is good for PCOS and helps regulate a woman's cycle. So after 6 months of researching about it and not having my own cycle, I decided to take the pills. I forgot what brand it was but after two weeks of taking vitex, I had a period. And it came back the next month. I thought I found my cure, but after the two period cycles, my period stop coming for a year. That was the biggest red flag that something was extremely wrong. But yeah, I am not saying "hey take vitex if you want a period", please consult your doctor before anything but I just remembered that it is one of the things out there that does work during my Cushing's days. It must be a very powerful herb to work on a cushie. But ultimately, my cure is removing the tumor.
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| Chasteberry |
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| Chasteberry, this one kinda looks like a blue bonnet |
Sunday, May 11, 2014
My Feature Story On Cushing's Support and Research Foundation
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| I will frame this! |
Well I read this newsletter a few times and not once did I realize my story was featured inside the newsletter until a cushie emailed me saying they saw my story! Wow, I feel so honored to be chosen to share my story to csrf readers. My feature page was stuck together so I had no idea it existed but thank you Benji for informing me! I hope you are feeling better these days. I want to thank CSRF, cushies, and supporters. To help me through hard times and to share my story for awareness. You guys are everything.
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| Stress is not the cause of Cushing's. Having Cushing's causes stress. But it sure will feel worse if you're in a stressful situation! |
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| Most Cushies suffer from bad memory, I still do. |
Tuesday, May 6, 2014
Cushing's Patients Story for MAY! Yay!
Happy May! So I have an idea that I want to start some new blog posts that are about experiences that others have had with Cushing's. I will still write occasionally about myself here and there but I want to start focusing about other topics. So get ready! If you want to share your story please email me at: yumnguyen07@yahoo.com or vannievan12@yahoo.com
You can be in any stage of this process or any kind of advice you would like to share. You can choose to be anonymous =]
I am honored to share the story of one of the first Cushie sisters I have talked to. She has been extremely helpful with my whole process and was an angel sent to me during my hard times. Here is our short interview.
ME: Wow you didn't look overweight or classic "textbook" Cushing's.
Cushie Sister: Yeah, that's part of the reason the doctors didn't really believe. But I was exercising like crazy and eating nothing. I should have been super skinny. But, I do think it prevented me from getting obese.
ME: What was your biggest obstacle looking back at that time before and during?
Cushie Sister: as far as advice, I know it's the hardest thing, and I'm not
sure that I could have done it but... I think it is important to
separate yourself from the disease. You have/had Cushing's but you, the
person, are separate from the disease. In some ways, I felt more
important because I had Cushing's. I needed the disease to feel
special. That was a mindset that was difficult to shake once I was
well.
There it is guys. Thank you for the informative advice and congratulations on your awesome progress!
You can be in any stage of this process or any kind of advice you would like to share. You can choose to be anonymous =]
I am honored to share the story of one of the first Cushie sisters I have talked to. She has been extremely helpful with my whole process and was an angel sent to me during my hard times. Here is our short interview.
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| (Click^ to view full picture) Our Cushie Sister's transformation |
Cushie Sister: Yeah, that's part of the reason the doctors didn't really believe. But I was exercising like crazy and eating nothing. I should have been super skinny. But, I do think it prevented me from getting obese.
ME: What was your biggest obstacle looking back at that time before and during?
Cushie Sister: I
guess the biggest obstacle while having Cushing's was knowing something
was off but being told nothing was wrong. I definitely felt like I was
a crazy woman.
After
surgery, I was expecting to feel great right away and the insane
tiredness was unexpected. It was like a heavy, wet blanket on me for
almost a year. Also, I didn't like being dependent on the hydro (steroids), and
had it in my head that if I weaned, I'd recover faster. That's not
actually true - it's actually detrimental. You can't force your adrenal
gland to wake up; it just takes time.
Now, I feel like the world is available to me and I am open to life. It's the best feeling ever, so in some ways, I'm grateful for Cushing's for giving me new eyes to see it.
Now, I feel like the world is available to me and I am open to life. It's the best feeling ever, so in some ways, I'm grateful for Cushing's for giving me new eyes to see it.
Me: any advice you can share to other viewers or patients?
There it is guys. Thank you for the informative advice and congratulations on your awesome progress!
Friday, April 25, 2014
Losing Your "Spark"
I talked to a Cushie friend of mine a while back and we talked about how great it feels to be looking more like ourselves these days. Shopping has been so enjoyable, to the point of becoming a shopping addiction. I was always a shopaholic before but now I feel like I want to buy everything I try on so this is not good for my piggybank but who cares I feel great about it! Another thing we talked about was though we look so much better than during our Cushings days, we still feel like our face has changed... like we lost our "spark". You know the feeling of how fresh faced and bright eyed you looked in your Highschool or College pictures but now you look in the mirror and see tired looking version of your old self? I mean, we both are very young but after Cushing's, and Adrenal insuffiency, we don't have that glow anymore.
During the early stages of my sickness I already noticed that my eyes looked different. It seem to have a blank stare instead of an emotion. In most pictures my eyes would look dead even when I am smiling. Then a few years into Cushing's, my eyes seemed like they were getting smaller and my eyelids got really heavy like I couldn't open my eyes wide. My nose looked like it was growing. I felt like my whole face got heavy that I just looked like I was frowning all the time. Then my lips which use to be my favorite feature began to look thinner. My skin was becoming reddish orange tinted and the acne was growing on top of my skin. I just felt like everything changed dramatically from the fresh face I use to have.
At that time, there was nothing I could do to fix my physical appearance but I had alot of people suggesting what they think I should do. It was overwhelming. I am happy to say that 11 months out of surgery, everything is improving so much. Everything that I mentioned above seemed to reverse. It's crazy but it was like the Cushing's literally melted off my face and body. Still being adrenal insufficient isn't easy. I feel tired all the time and my face does too. Even though I look the same as before, maybe even skinnier... The fatigue hasn't left my face. My under eye circles are getting darker and I still feel that tiredness in my eyes even though I can open in wider now. I hope in time when my hormones start raising up that I can see that spark again. But until then, make up, filters and a good sleep is my best friend =] Here are some makeup tips I've been posting on IG. People ask why I don't start a makeup youtube but I am too awkward on camera so I am easing my way into it with some "how to" snapshots!
Now If you want something more dramatic for a night time....
During the early stages of my sickness I already noticed that my eyes looked different. It seem to have a blank stare instead of an emotion. In most pictures my eyes would look dead even when I am smiling. Then a few years into Cushing's, my eyes seemed like they were getting smaller and my eyelids got really heavy like I couldn't open my eyes wide. My nose looked like it was growing. I felt like my whole face got heavy that I just looked like I was frowning all the time. Then my lips which use to be my favorite feature began to look thinner. My skin was becoming reddish orange tinted and the acne was growing on top of my skin. I just felt like everything changed dramatically from the fresh face I use to have.
At that time, there was nothing I could do to fix my physical appearance but I had alot of people suggesting what they think I should do. It was overwhelming. I am happy to say that 11 months out of surgery, everything is improving so much. Everything that I mentioned above seemed to reverse. It's crazy but it was like the Cushing's literally melted off my face and body. Still being adrenal insufficient isn't easy. I feel tired all the time and my face does too. Even though I look the same as before, maybe even skinnier... The fatigue hasn't left my face. My under eye circles are getting darker and I still feel that tiredness in my eyes even though I can open in wider now. I hope in time when my hormones start raising up that I can see that spark again. But until then, make up, filters and a good sleep is my best friend =] Here are some makeup tips I've been posting on IG. People ask why I don't start a makeup youtube but I am too awkward on camera so I am easing my way into it with some "how to" snapshots!
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| Barefaced with just my eyebrows and lipbalm on ^.< |
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| Blue Eyeliner helps your eye whites look whiter so you look more awake |
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| Blue Eyeliner :) |
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| Add some fuller false lashes and darker eyeshadow for a night time look |
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| Make up can make you beautiful on the outside but being gracious will make you beautiful on the inside. |
Sunday, April 13, 2014
You Deserve the BEST Healthcare! & Why I Avoid Doctors & Clown Life
Hi guys, I just want to say sorry for the intense entry last post. I am still in the stages of Recovery and if any Cushie could tell you, it is quite the roller coaster of emotions. And It was the last thing I expected from a friend during my recovery to do but that's life. I remember reading somewhere about a story about how ducks tend to flap their wings a few times after a stressful event or even a a fight to release their stress out of their system then they move on. Well I guess writing is my way of flapping my wings to let the stress out of my system. LOL anyways, I wanted to talk about getting the most out of your healthcare.
It seems as this is a very common problem that patients face. We go to see a doctor for a symptom and somehow we get rushed out of the docs office realizing we forgot to tell them the most important thing and the tests we wanted
them to order or the medications you were interested in. And then sometimes we just get ignored by the doctor because we don't "look sick" enough. When I first noticed symptoms of irregular periods and hairloss, I went to see a doctor. I told her I was worried about my period and the doctor gave me a pap smear. She then told me everything down there looked normal so I would be okay. She then looked at my hair and gave me a look like I was crazy and told me there was nothing abnormal about my looks and sent me home. In a way I felt like doctor knows best but I couldn't help feeling that she could have done more for me as a doctor and I had much more questions that went unanswered as a patient. So a few months later I went to see another doctor. This time I wrote down all of my symptoms and how long they have been persisting. I then hand the list to my new doc. The doctor then tells me I looked like a healthy young lady and even though I am gaining a little weight, I was still small in the doctors opinion. They then talked to me about birth control pills that would help regulate my menses and maybe help with the hormonal symptoms. I knew that BCP was not what I wanted and that I wanted to figure out what was causing the symptoms rather than masking it. But at the time I was too timid to ask these doctors since they are the expert and the are so fast paced that it was hard to get a word in. So I left feeling like I just wasted more time and co pay for nothing. So, I took their word for it. I guess I was healthy but little did I know. I was very sick.
Having these bad experiences at the doctors seemed to repel me from going to get my annual checkups. I made every excuse not to have to go see a doctor. They will just ignore me, they will just waste both our time, my money, and I will get prescribed things I don't want or need to take. So it took years later when I finally gave up and saw an Endocrinologist. A very expensive one I might add. I thought I was young and healthy and did not need health insurance.. Boy was I wrong about that one too. Well the month leading up to seeing my endo, I made another list of symptoms. This list was a very long one. I felt as if I was making these things up in my head as I was writing them down because it just seemed so dramatic. My list included: sad feelings, crying spells, rollercoaster mood changes, fat cheeks, no periods, belly fat, bloating, acne, hairy face and arms :( tired, joint pains, red face, orange hands, no bowel movement, hunger, weight gain, darkness on my neck oh yeah and armpits! and many more :( It just seemed like a list of symptoms for a sad clown but yes it was all real and all mine. Well I handed the list to my endo and he gave me the eyebrow and stared into my soul. It can also be very distracting that he was the most handsome Doctor I have ever met. And so he looked at me and started typing down all of my symptoms into his computer. Again, I felt the sense of being ignored. He then asks, " you ever heard of PCOS? Ever thought about BCP? I said no, But I am sure I don't have PCOS. I then tell him that I wanted to get to the root of my problem. He then gave me another high brow stare and said he'll do everything he can to figure out what is troubling me. I felt like I hit the jackpot. He then ordered every test under the sun and a few months later he weeded out the high cortisol as the source of concern. I had to take many dexamethasone tests maybe 4 times, then we moved on to 24 hour urinary analysis, saliva, and more blood tests. Everytime the results were positive but he kept making me repeat these tests. At one point I remember I felt like I was hitting a wall and all these tests were wasteful and pointless. I felt as if my fear was that he would be like every other doctor and send me home with no solution. A few weeks pass as I stood by my phone waiting for his call. He calls and tells me to immediately go get a CT that he ordered and I did. A week later I finally get my answer. This time I was glad I stuck through and found myself a diamond of a doctor. He saved my life.
I guess this story is to remind others that you need to be adamant about your health. You know your body the best. I get that doctors are the expert but they cannot diagnose you in the first visit. Sometimes if you feel like your symptoms are persisting. You have to demand to be tested for everything. Go look for a specialist who have treated people with your symptoms. You don't go to a chiropractor to get your tooth cavity fixed. Write down your symptoms. Track any changes. The process of diagnosing could take months and years. Be patient but be persistent. Never take no for an answer if you know you need medical intervention And mainly don't give up on yourself. You deserve the best service you can because it is your life. Have a healthy day!
It seems as this is a very common problem that patients face. We go to see a doctor for a symptom and somehow we get rushed out of the docs office realizing we forgot to tell them the most important thing and the tests we wanted
them to order or the medications you were interested in. And then sometimes we just get ignored by the doctor because we don't "look sick" enough. When I first noticed symptoms of irregular periods and hairloss, I went to see a doctor. I told her I was worried about my period and the doctor gave me a pap smear. She then told me everything down there looked normal so I would be okay. She then looked at my hair and gave me a look like I was crazy and told me there was nothing abnormal about my looks and sent me home. In a way I felt like doctor knows best but I couldn't help feeling that she could have done more for me as a doctor and I had much more questions that went unanswered as a patient. So a few months later I went to see another doctor. This time I wrote down all of my symptoms and how long they have been persisting. I then hand the list to my new doc. The doctor then tells me I looked like a healthy young lady and even though I am gaining a little weight, I was still small in the doctors opinion. They then talked to me about birth control pills that would help regulate my menses and maybe help with the hormonal symptoms. I knew that BCP was not what I wanted and that I wanted to figure out what was causing the symptoms rather than masking it. But at the time I was too timid to ask these doctors since they are the expert and the are so fast paced that it was hard to get a word in. So I left feeling like I just wasted more time and co pay for nothing. So, I took their word for it. I guess I was healthy but little did I know. I was very sick.
Having these bad experiences at the doctors seemed to repel me from going to get my annual checkups. I made every excuse not to have to go see a doctor. They will just ignore me, they will just waste both our time, my money, and I will get prescribed things I don't want or need to take. So it took years later when I finally gave up and saw an Endocrinologist. A very expensive one I might add. I thought I was young and healthy and did not need health insurance.. Boy was I wrong about that one too. Well the month leading up to seeing my endo, I made another list of symptoms. This list was a very long one. I felt as if I was making these things up in my head as I was writing them down because it just seemed so dramatic. My list included: sad feelings, crying spells, rollercoaster mood changes, fat cheeks, no periods, belly fat, bloating, acne, hairy face and arms :( tired, joint pains, red face, orange hands, no bowel movement, hunger, weight gain, darkness on my neck oh yeah and armpits! and many more :( It just seemed like a list of symptoms for a sad clown but yes it was all real and all mine. Well I handed the list to my endo and he gave me the eyebrow and stared into my soul. It can also be very distracting that he was the most handsome Doctor I have ever met. And so he looked at me and started typing down all of my symptoms into his computer. Again, I felt the sense of being ignored. He then asks, " you ever heard of PCOS? Ever thought about BCP? I said no, But I am sure I don't have PCOS. I then tell him that I wanted to get to the root of my problem. He then gave me another high brow stare and said he'll do everything he can to figure out what is troubling me. I felt like I hit the jackpot. He then ordered every test under the sun and a few months later he weeded out the high cortisol as the source of concern. I had to take many dexamethasone tests maybe 4 times, then we moved on to 24 hour urinary analysis, saliva, and more blood tests. Everytime the results were positive but he kept making me repeat these tests. At one point I remember I felt like I was hitting a wall and all these tests were wasteful and pointless. I felt as if my fear was that he would be like every other doctor and send me home with no solution. A few weeks pass as I stood by my phone waiting for his call. He calls and tells me to immediately go get a CT that he ordered and I did. A week later I finally get my answer. This time I was glad I stuck through and found myself a diamond of a doctor. He saved my life.
I guess this story is to remind others that you need to be adamant about your health. You know your body the best. I get that doctors are the expert but they cannot diagnose you in the first visit. Sometimes if you feel like your symptoms are persisting. You have to demand to be tested for everything. Go look for a specialist who have treated people with your symptoms. You don't go to a chiropractor to get your tooth cavity fixed. Write down your symptoms. Track any changes. The process of diagnosing could take months and years. Be patient but be persistent. Never take no for an answer if you know you need medical intervention And mainly don't give up on yourself. You deserve the best service you can because it is your life. Have a healthy day!
Tuesday, April 8, 2014
FEVER FLU and Adrenal Insuffiency
Hi there quick post. I am feeling extra sick. This feels like the time I had a fever a month ago and I don't know why I am getting it so often. I wonder if that is normal for A.I. but I need to double up on the steroids. I hope I will feel better tomorrow. I have a headache, sore throat, weakness, and I cannot focus. Earlier I did not recognize the street I was on. That was pretty alarming. I don't know if It is all related but I hope things will resolve soon. Alright that's all I got for today.
Cushing's Awareness Day
So I am a newbie here. I didn't know that April was the month to write a post everyday for 30 days for Cushing's awareness. I am 8 days late but I will try to catch up. Who's counting eh? Lets talk about symptoms and progress. Oh yeah thanks Marian for updating me on this!!
It's been almost 10 months since my adrenalectomy. Symptoms I still have is rapid heartbeat for certain things. Food can trigger it, high activity, social anxiety and caffeine. It's not as bad as before but it still happens maybe 2 or 3 times a week. No more panic attacks! YAY! No more paranoid feelings when I am out. The depression is much better. I find myself enjoying life more. I am socializing again and doing more of my hobbies. My menses come once every two months. I am getting more tired lately and extra unmotivated to get things done. I don't know if it is related but before I could multitask and wake up early but now it feels impossible to get out of bed. My memory is getting pretty crappy. The short term memory is bad. I repeat things and lose things that are right in front of me. Everyday is a struggle. Can't remember what I am studying and my textbook is a puzzle to me. I will be getting a brain MRI in a week to figure out why I am having headaches every night and the memory problems. THE STRUGGLE IS REALLLL lol hmmm.. weight is still stable. I am eating lots of fast food, takeout and restaurants. I have mad sugar cravings. Still get faint often.. The nurse says I have low blood pressure so i guess that's why I will eat a cookie then crave another piece of chocolate. SIGH I hope this won't make me gain weight once my hormones regulate.. I have absolutely no motivation to eat healthy and go workout or be productive versus before surgery I was working, going to school, eating super healthy and working out. Now I have to find great effort to do simple things. My bones still hurt, I tried to squat and heard my knees crack and pop and it hasnt stopped cracking ever since so I guess no squats for me. lol I will probably get a fat ass from eating all these carbs i'm inhaling anyway. The hairy-ness is sooo much better. This guy in my class said he hates hairy arms and asked to look at mines and said I had nice hairless arms. HA! He should have seen me a year ago. I was a furry hamster... But yeah I shaved my whole body and the hair growth is much thinner and almost blonde so that is very good progress. The acne is better as you saw in my last video.. But I still get pimples here and there so I still feel paranoid about that. The hair on my head is filling up nicely. Just got a fresh cut and now my hair feels so soft! Okay there's so more stuff but I don't remember so I will post a better blog next time. I am a little distracted right now =] Here's some pics of my haircut and progress pic!
It's been almost 10 months since my adrenalectomy. Symptoms I still have is rapid heartbeat for certain things. Food can trigger it, high activity, social anxiety and caffeine. It's not as bad as before but it still happens maybe 2 or 3 times a week. No more panic attacks! YAY! No more paranoid feelings when I am out. The depression is much better. I find myself enjoying life more. I am socializing again and doing more of my hobbies. My menses come once every two months. I am getting more tired lately and extra unmotivated to get things done. I don't know if it is related but before I could multitask and wake up early but now it feels impossible to get out of bed. My memory is getting pretty crappy. The short term memory is bad. I repeat things and lose things that are right in front of me. Everyday is a struggle. Can't remember what I am studying and my textbook is a puzzle to me. I will be getting a brain MRI in a week to figure out why I am having headaches every night and the memory problems. THE STRUGGLE IS REALLLL lol hmmm.. weight is still stable. I am eating lots of fast food, takeout and restaurants. I have mad sugar cravings. Still get faint often.. The nurse says I have low blood pressure so i guess that's why I will eat a cookie then crave another piece of chocolate. SIGH I hope this won't make me gain weight once my hormones regulate.. I have absolutely no motivation to eat healthy and go workout or be productive versus before surgery I was working, going to school, eating super healthy and working out. Now I have to find great effort to do simple things. My bones still hurt, I tried to squat and heard my knees crack and pop and it hasnt stopped cracking ever since so I guess no squats for me. lol I will probably get a fat ass from eating all these carbs i'm inhaling anyway. The hairy-ness is sooo much better. This guy in my class said he hates hairy arms and asked to look at mines and said I had nice hairless arms. HA! He should have seen me a year ago. I was a furry hamster... But yeah I shaved my whole body and the hair growth is much thinner and almost blonde so that is very good progress. The acne is better as you saw in my last video.. But I still get pimples here and there so I still feel paranoid about that. The hair on my head is filling up nicely. Just got a fresh cut and now my hair feels so soft! Okay there's so more stuff but I don't remember so I will post a better blog next time. I am a little distracted right now =] Here's some pics of my haircut and progress pic!
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| Loving this hair. I did not change my color this is a box color from walgreens =] |
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| Recovery is a beautiful roller coaster. Hello dimple, never thought I would see you again. |
Friday, March 7, 2014
LIQUID GOLD 4 CUSHIES!
Hello Cushies! If you guys are going through recovery, preparing to operate, or just super dry skinned. I found the holy grail lotion!
During my first month of recovery, I was not prepared about getting the itchy dry skin. I read all Cushies have the terrible itchy dry skin all over but of course I didn't think it would be that bad. Then one night I woke up in the middle of night and was so itchy I kept scratching myself and it did not help the burning sensation, if anything scratching irritated it more. I could not sleep and was so upset it felt like a allergic reaction. The next morning I looked and noticed I had patches of scaly stuff on the tops of my arm and the side of my backs. In time it got worse I noticed a strange texture to my skin almost like bumpy chicken skin. I researched what was going on with me and it seems like this is a common problem during recovery. So I started putting lotion on my skin and it seemed to help the itching however the lotion seemed to just sit on top of my scaly dry skin. So I tried different lotions but none of them seemed to penetrate deep in the skin for lasting relief. Then I just tried some lotions that were very thick and felt sticky all the time.
That was until I discovered Borage Therapy Lotion. OMG this is my holy grail lotion. I am so excited about it. I have to share the liquid gold. This lotion is the best lotion i've ever used. It absorbs quickly, penetrates deep layers in the skin, not sticky, fragrance free and gets rid of the dry scaly goose bumpy skin. It has a yellow color to it and a nice texture The smell kind of reminds me of cooked oatmeal. It does have oatmeal and borage oil as the main ingredients I think. Disclaimer: pleas check ingredients to see if you are sensitive or allergic to ingredients!
I got this one at vitaminshoppe in store. but they sell it on amazon for bulk packs and individual. This one was 12.99 but I used a coupon for half off. I would still pay full price for this stuff. My muffin recently complimented how smooth my skin was and kept touching my arms haha I love it!
During my first month of recovery, I was not prepared about getting the itchy dry skin. I read all Cushies have the terrible itchy dry skin all over but of course I didn't think it would be that bad. Then one night I woke up in the middle of night and was so itchy I kept scratching myself and it did not help the burning sensation, if anything scratching irritated it more. I could not sleep and was so upset it felt like a allergic reaction. The next morning I looked and noticed I had patches of scaly stuff on the tops of my arm and the side of my backs. In time it got worse I noticed a strange texture to my skin almost like bumpy chicken skin. I researched what was going on with me and it seems like this is a common problem during recovery. So I started putting lotion on my skin and it seemed to help the itching however the lotion seemed to just sit on top of my scaly dry skin. So I tried different lotions but none of them seemed to penetrate deep in the skin for lasting relief. Then I just tried some lotions that were very thick and felt sticky all the time.
That was until I discovered Borage Therapy Lotion. OMG this is my holy grail lotion. I am so excited about it. I have to share the liquid gold. This lotion is the best lotion i've ever used. It absorbs quickly, penetrates deep layers in the skin, not sticky, fragrance free and gets rid of the dry scaly goose bumpy skin. It has a yellow color to it and a nice texture The smell kind of reminds me of cooked oatmeal. It does have oatmeal and borage oil as the main ingredients I think. Disclaimer: pleas check ingredients to see if you are sensitive or allergic to ingredients!
I got this one at vitaminshoppe in store. but they sell it on amazon for bulk packs and individual. This one was 12.99 but I used a coupon for half off. I would still pay full price for this stuff. My muffin recently complimented how smooth my skin was and kept touching my arms haha I love it!
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| liquid GOLD! |
Friday, February 28, 2014
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.
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.
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| I ask that we can help pray for her to find an answer and have the best health she deserves. |
Wednesday, February 19, 2014
If My Makeup Smears All Bets Are OFF!!
I'm kind of bored right now so what better way to be productive than to write down my thoughts. The last post I had made was basically me swooning over my lovely dude but last week on Valentines day, I was NOT swooning for him.
On Valentines day we got into a heated discussion on the way to our dinner date and the discussion became me and him getting annoyed that neither of us understood each others perspective on a certain subject. Well in the moment, I felt like my Vday was going downhill. All bets are off when my cat eyeliner smears! >.< It was not how imagined our day to be. After that we lost our reservation and ended up driving down the street to a random restaurant. At 8:45pm, the line was very long out the door (and around the building) and the hostess said it'll be about 1 hour and 30 mins of wait. I was annoyed but instead of calling it a night we decided to just wait it out and went to the bar. We bought some wine at the bar and just talked to each other, not about the argument we just had but about random things, funny things, anything. (for ex: what was the worst thing you ever did to impress someone?) That will sure get a conversation started! Then our buzzer went off and it was our turn to be seated. My muffin looked at his phone and we both realized 2 hours had just passed and we didn't even noticed. But we were in a better place than we were before we left the house and before our argument. I want to write this down so I remember the lesson I learned was that our relationship is not perfect but if you choose to love and laugh then the rough patches become smoother. I try to remember now that I have a choice. Do I want to suffer and make others suffer because I am unhappy? Or do I want to be happy and my happiness makes the person I love happy too. haha now i'm confusing myself. Well that was my imperfect Vday story.
After Vday, this Sunday I ate some medium rare fajita meat takeout at Taco Cabana loll NEVER EAT rare meat from TC!! That was a bad idea... Well a few hours later I felt sick with a sore throat. The next day I felt terrible and that night I had symptoms of a cold. In the morning I was hot and sweaty but cold. My joints and muscles were in so much pain, my head was throbbing and my throat felt raw. Muffin immediately got up at 6 in the morning and went to Walmart and bought some medicine and a thermometer. When he got home he got some soup and took my temprature I was burning up to 102 degrees. He was worried because never had I gotten the flu and fever combo for years. and if it reached 104 I would need to go to hospital. I guess having Cushing's really suppressed my immune system and allergies until I had the surgery. Now I get sick pretty often but this was by far the worst. So Muffin was worried and decided to take off work to stay home and nurse me back to homeostasis or till I stabilized loll. So we doubled up on the Cortef steroids and stayed in our bed the whole day sleeping, checking my tempurature, taking meds and watching tv. Even though that was the worst fever I have ever experienced, it was my favorite sick day I've ever had.
So I guess this is really a lesson that losing expectations on what you want and what you need. I don't know if that makes sense, im getting tired and my thought process is declining haha well have a blessed day for anyone who is ever going to read this entry! And remember that you have happy choices! <3
On Valentines day we got into a heated discussion on the way to our dinner date and the discussion became me and him getting annoyed that neither of us understood each others perspective on a certain subject. Well in the moment, I felt like my Vday was going downhill. All bets are off when my cat eyeliner smears! >.< It was not how imagined our day to be. After that we lost our reservation and ended up driving down the street to a random restaurant. At 8:45pm, the line was very long out the door (and around the building) and the hostess said it'll be about 1 hour and 30 mins of wait. I was annoyed but instead of calling it a night we decided to just wait it out and went to the bar. We bought some wine at the bar and just talked to each other, not about the argument we just had but about random things, funny things, anything. (for ex: what was the worst thing you ever did to impress someone?) That will sure get a conversation started! Then our buzzer went off and it was our turn to be seated. My muffin looked at his phone and we both realized 2 hours had just passed and we didn't even noticed. But we were in a better place than we were before we left the house and before our argument. I want to write this down so I remember the lesson I learned was that our relationship is not perfect but if you choose to love and laugh then the rough patches become smoother. I try to remember now that I have a choice. Do I want to suffer and make others suffer because I am unhappy? Or do I want to be happy and my happiness makes the person I love happy too. haha now i'm confusing myself. Well that was my imperfect Vday story.
After Vday, this Sunday I ate some medium rare fajita meat takeout at Taco Cabana loll NEVER EAT rare meat from TC!! That was a bad idea... Well a few hours later I felt sick with a sore throat. The next day I felt terrible and that night I had symptoms of a cold. In the morning I was hot and sweaty but cold. My joints and muscles were in so much pain, my head was throbbing and my throat felt raw. Muffin immediately got up at 6 in the morning and went to Walmart and bought some medicine and a thermometer. When he got home he got some soup and took my temprature I was burning up to 102 degrees. He was worried because never had I gotten the flu and fever combo for years. and if it reached 104 I would need to go to hospital. I guess having Cushing's really suppressed my immune system and allergies until I had the surgery. Now I get sick pretty often but this was by far the worst. So Muffin was worried and decided to take off work to stay home and nurse me back to homeostasis or till I stabilized loll. So we doubled up on the Cortef steroids and stayed in our bed the whole day sleeping, checking my tempurature, taking meds and watching tv. Even though that was the worst fever I have ever experienced, it was my favorite sick day I've ever had.
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| ^ The Soup Police! |
So I guess this is really a lesson that losing expectations on what you want and what you need. I don't know if that makes sense, im getting tired and my thought process is declining haha well have a blessed day for anyone who is ever going to read this entry! And remember that you have happy choices! <3
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