My Feature Story On Cushing's Support and Research Foundation

I will frame this!

So I received my spring Cushing's support and research foundation (csrf) in the mail. I was so excited to read it. Inside has a lot of interesting new research on the disease and doctors answers for questions people want to know about Cushings. I thought I knew all about it through my own research and experience but it had alot of answers and information I did not know. It also talks about cyclical cushing's which is harder to diagnose and alot of people have been emailing me about why they have all the symptoms and features of cushing's but their test are never positive. So I think that we always have to prepare for other possibilities. I am not a doctor to say whether you have it or not but I do encourage anyone to find a professional to investigate to why they aren't feeling "normal". Also the newsletter features patients stories.

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.

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!

Most Cushies suffer from bad memory, I still do.

Cushing's Patients Story for MAY! Yay!

Happy May! So I have an idea that I want to start some new blog posts that are about experiences that others have had with Cushing's. I will still write occasionally about myself here and there but I want to start focusing about other topics. So get ready! If you want to share your story please email me at: yumnguyen07@yahoo.com or vannievan12@yahoo.com
You can be in any stage of this process or any kind of advice you would like to share. You can choose to be anonymous =]

I am honored to share the story of one of the first Cushie sisters I have talked to. She has been extremely helpful with my whole process and was an angel sent to me during my hard times. Here is our short interview.

(Click^ to view full picture) Our Cushie Sister's transformation

 ME: Wow you didn't look overweight or classic "textbook" Cushing's.

 Cushie Sister: Yeah, that's part of the reason the doctors didn't really believe.  But I was exercising like crazy and eating nothing.  I should have been super skinny. But, I do think it prevented me from getting obese. 

ME: What was your biggest obstacle looking back at that time before and during?

Cushie Sister: I guess the biggest obstacle while having Cushing's was knowing something was off but being told nothing was wrong.  I definitely felt like I was a crazy woman. 

After surgery, I was expecting to feel great right away and the insane tiredness was unexpected.  It was like a heavy, wet blanket on me for almost a year.  Also, I didn't like being dependent on the hydro (steroids), and had it in my head that if I weaned, I'd recover faster.  That's not actually true - it's actually detrimental.  You can't force your adrenal gland to wake up; it just takes time.

Now, I feel like the world is available to me and I am open to life.  It's the best feeling ever, so in some ways, I'm grateful for Cushing's for giving me new eyes to see it.

Me: any advice you can share to other viewers or patients?

Cushie Sister: as far as advice, I know it's the hardest thing, and I'm not sure that I could have done it but... I think it is important to separate yourself from the disease.  You have/had Cushing's but you, the person, are separate from the disease.  In some ways, I felt more important because I had Cushing's.  I needed the disease to feel special.  That was a mindset that was difficult to shake once I was well. 

There it is guys. Thank you for the informative advice and congratulations on your awesome progress!

Undiagnosed, Untreated, Unheard

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

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