OCTOBER Cushing's Advisory Board in New Jersey

I am pleased to share that I was invited to A Cushing's Disease Online Influencer Advisory Board In New Jersey. My sponsor is company called Novartis which specializes in finding care and cure for rare complicated diseases. I was asked to come to the Advisory board when they found my videos and blog. I am really happy to be able to have this opportunity to be a part of something for our Cushie community. Thank goodness there are companies like Novartis that cares about us.

Being sick with a rare disorder or disease is hard because there is limited information out there which leads to limited knowledge when we search for help. There is a small community and there are less known medications for us. That's why doctors have a hard time recognizing a rare disorder and it makes it much harder to get the proper treatment, I don't like to always compare it to Cancer or ALS (god bless the people going through those) but there is little awareness. When you see a pink ribbon you automatically are aware of breast cancer. When you see an ice bucket challenge you think of ALS. What about Cushing's? Sure we have Cushing's awareness month but it is only known in our small community. How do we get it to be known worldwide like a pink ribbon would? I know soon our time will rise. Soon enough our little blue yellow ribbon will be known.

 When I first started doing this blog, it was just an outlet to complain because I felt like nobody understood what I was going through. Then I started to research and reach out to other patients and found a safe haven in online forums and other blogs but I had no idea people were reading my blog and seeing my videos. I was at a point that I didn't want to check my views because I thought that no one would even watch or read so what is the point? It was only when I got my first email from a Cushing's patient was when I realized that people are watching. I then checked my youtube account to see that there were others like me trying to reach out for answers in the comments. Now for Novartis to reach out to me is very exciting and I cannot wait to meet the people behind this amazing company. And I think I may also meet some cushing's patients in the flesh!
Below is the link to Novartis website and statement:

Our mission

Our mission is to care and cure. We want to discover, develop and successfully market innovative products to prevent and cure diseases, to ease suffering and to enhance the quality of life.

http://www.novartis.com/index.shtml

Disclaimer: 
Novartis provided me with information and paid for travel, accommodations and meals during our time together. 

My meeting with a friend from my blog 
  October is such a great month. A friend from my blog reached out to me a few months ago. She knows that her body is showing some abnormal symptoms. She is in the stages of testing everything to see what the problem may be. She did have a recent stay in the hospital for another health problem. Having abnormal symptoms almost like Cushing's may indicate some kind of mystery health issue that needs solving. She was traveling to my city last week and so we decided to meet up. We talked and hung out for hours and she is really an amazing person with a big heart. I feel so lucky to be able to meet someone like her that we all can relate to. I can relate to her on many levels since we are both too young to be feeling this way. Come visit Houston again Adrianne! Or maybe we can meet up at Sea world =] I ask that we pray for Adrianne will get her diagnosis soon so she can have good a healthy quality of life back.

So glad to meet this beautiful young lady ^.^ <3

 

Test Results & New Video Update!

Hi guys, I was bored surfing on youtube and clicked on my channel only to see that the Cushing's video views are up to 14k with many comments. It has really made me happy that people are watching, talking, connecting and raising awareness for Cushing's syndrome and disease. Thank you all the viewers, subscribers and for the shares on youtube. I feel a sense of connection from the community to one another and my goal is to make this illness a little more known out there. I wish I could get an already famous youtuber to just shout us out and so we can have a bigger amount of awareness.

It's easy to forget as time goes by. We get this illness and write blog about it but then once we recover we forget how hard it was and how rare it is.  I get that sometimes we just want to forget about what had happened and move on from our life and life begins to feel better so we don't really care to complain on blogs but you guys, please keep sharing your story to the world because you might just save one person's life for viewing your story. There has to be people who are proactive about awareness for every other disease for it to be well known so we need to do this for our Cushie family. Sorry if I sound all preachy but I really hurt when I get these emails of people who are going through the same thing I was a few years ago when the disease was in the early stages. Being misunderstood, misheard, ignored. I was reading a story of a celebrity who is depressed, gained alot of weight and can't lose it and I just wonder do they know about CD? Or I walk down the street and see a person with a moonface and buffalo hump and wonder if they know they are sick?

Fluctuating Test results. Not sure if it's improvement but hey better than having high cortisol!

Well I have some big Cushing's News coming up that I want to share in my next blog. It's still in the works. I am really excited about it! If you haven't already, please comment and keep the converstation going!! Here's my moon face again =]

My 2013 Video

Here's my updated 2014 video:

MY RELATIVES HAVE ADRENAL TUMORS!

WOW So my mom told me a few weeks ago that she has a cousin named Mai in Vietnam who had an adrenal tumor. I was in disbelief since this is supposedly a "rare" tumor but someone in my bloodline has one too. I was curious to know more so I asked for my mom's cousins contact and wrote to her. She then responds to me a week later to confirm that she did indeed have a adrenal tumor. Due to the language barrier it was hard to communicate but from what She told me she did not have Cushing's Syndome but another syndrome called Pheocromocytoma  Syndrome. Her first surgery was unsuccessful but her second time was a success because they removed the whole gland with tumor. Ans she does not have to take Steroids since it is not like Adrenal insuffiency.. It was very hard to think that we have a connection. Upon discovering this crazy crazy revelation, Mai mentions that her cousin (Nancee) from California also has an adrenal tumor and Cushing's Syndrome and was diagnosed this year and had her surgery in April... What.... Another distant relative from my mom's side has an adrenal tumor AND Cushing's?? This is so hard to believe yet an amazing discovery.. I then was more curious to speak to Nancee and waited to get into contact with her.

Another week passes by and Nancee responds. She also confirms that she has an adrenal tumor and Cushing's syndrome. She is 42 and has had Cushings for about 6 years and had her surgery this April. Her symptoms are classic CD symptoms much like mines and now in recovery. Just like ours, her recovery is rough mostly with the depression and body pain. We then relate to our bad experiences with most doctors and endos who have not treated adrenal patients and are usually baffled by our cases.

I just can't seem to put together this fact that two of my distant relatives had the adrenal tumors and all this time I believed that it was a rare tumor that only affects a 2 out of a million people. We know that not all families get Adrenal/ Pit tumors or have CD but what about the ones that do? What is the connection? Why do endos, text books and online research claim that Cushing's is an isolated disease when now there is evidence that it does happen to family members. Just like the other story I posted about the brother and sister who both had CD? Now It's more evidence to support this theory and for us to believe that Cushing's is not isolated and very much prevalent.

 FORGET WHAT THE DOCTORS, INTERNET AND TEXTBOOKS TELL YOU. How is this possible??? I will try to investigate.

My Hair Has Been Electrocuted

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

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

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

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

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.

Pot belly in cushing's dog

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.

Same IG Different Name

Hey guys I forgot to update but I changed my Instagram to 1delicateheart last week. Same page new name & It matches the blog now :) Thank you everyone for the positive feedback and to all the cushies just know that we can all connect and suffer/ progress together <3

Same girl, same dress. Stretchy clothes are the way to go!

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.

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.

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.

^Recognize the symptoms of a crisis^