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.

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.

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!

Barefaced with just my eyebrows and lipbalm on ^.<

Blue Eyeliner helps your eye whites look whiter so you look more awake

Blue Eyeliner :)

 Now If you want something more dramatic for a night time....

Add some fuller false lashes and darker eyeshadow for a night time look

Make up can make you beautiful on the outside but being gracious will make you beautiful on the inside.

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.

Body Progress Pic Update

^Bloated, I couldn't suck in my stomach lol

I've been kinda in a funky mood feeling extremely weak and dizzy. Yesterday I halfway blacked out. I started seeing grey and tingles then I fell in the hallway. So I greyed out lol.. It usually happens when I stand up too quickly. I feel  numb on my face & chest like I am not getting enough air in my lungs. which makes the anxious feelings worse. And the low energy feeling lasts all day. To get my mind off it, I took some pictures to remind me I AM getting better. And I want to share it here. The other day the nurse weighed me and the scale said 112lbs. I couldn't believe her I made her weigh me again. And I haven't been that low since highschool. I think even then I was 115lbs. So great my body doesn't hate me anymore! The weird thing is that my height was 5'3 but I use to be 5'5, before surgery I measured 5'4 - how did I lose 2inches???  I'm posting up some pictures with Cushing's and 6 months after Adrenalectomy. And the last one is a few days after surgery. The scars are healing nicely. So far I have lost maybe 2 or 3 lbs every month to a total of 17lbs! And what is my secret? Getting a Cushing's tumor removal! Lol I have barely exercised, or changed my diet, I do eat smaller portions because if I stuff myself I feel sick... Every time I try to run it is too painful & nauseous. And I am constantly craving sweets and carbs these days. I guess that is what low sugar and adrenal Insuffiency will do to you-- give mad cravings but still lose weight. I just walk for like 30 mins a day... But I am very inactive compared to before. So it is just a joy to see progress!