My Cushings Journey

Oh where do I begin? Lets start with I didnt even know what Cushings was and lets back track to the beginning....

The day I got diagnosed was my 6th time in the Drs office for Bronchitis that year and I had had walking pneumonia also. I went in and cried to my DR that I am barely eating, gaining weight, I am not sleeping but 2 hours a night and that I feel like I am going crazy and depressed, my body hurts and I am bruising all the time. He looked at me and said, "You have Cushings I bet". I looked back at him and thought is this man crazy? What is Cushings? He looked at my neck and said I had a buffalo hump, looked at my stomach and saw my stretch marks (straie) and looked at my food log and saw I was only eating 1400 calories a day and had gained 80 pounds in 1.5 years and was still gaining. 

NOW LETS GO BACK...

I had a hysterectomy 3 years ago and felt like I had hormone imbalances every since. Actually I felt like I had them before that even, but I always decided that the weight gain, the hair on my chin, the loss of muscle, the bruising, was all because of hormones from the hysterotomy. WELL it WAS from the hormones but not from that. I went to DR after DR after DR and they said my estrogen, testosterone etc was fine. Or they would give me a pill for depression or more estrogen to cure my hot flashes, red face etc. The depression pills never worked for me. I even went to a Dr that gave me more estrogen to take and then had their clinical psychologist call me to see if I wanted to come in to see them and talk because I "had bruising, cried a lot, was 37 and must have a bad home life". That made me so mad!! I wasn't getting beat! I left that clinic and went to another one. It was just meant to be because thats when my MD said to me that I must have Cushings. Look at my Buffalo Hump....

After he said I needed to test he set me up for two tests. An 8am cortisol blood draw and a DEX test. One came back positive and one negative. Then my Dr said well maybe not. By this time I had looked up everything I could on Cushings and started researching. This is also where I saw my co bloggers Vans video on Cushings which to this day she is my rock-star! My Dr referred me to two endocrinologists and they both turned me down. I researched Cushings specialists and decided to go to who I thought was the top endocrinologist at the time Dr. Friedman. He listened to me. I tested a lot!! Tested wrong at first even. Tested when I felt bad and I should of been testing when I felt good (on a high). So at first some of my tests were coming back normal because I would cycle. After learning more and figuring out my symptoms and when to test....they started coming back high, high and high. I went in for a MRI and they saw something that COULD be an tumor. I was scared and relieved at the same time. What a weird feeling to have. My endo saw a tumor on the left side and my neurosurgeon saw one he thought on the right. It was very confusing but  I was finally diagnosed in the beginning of July 2014 and had my surgery scheduled three weeks later in Houston at MD Anderson.

Once I was ready for surgery it could not come fast enough. I wanted to get rid of the tumor and was hopeful to get back to a normal life. By the time my surgery rolled around from the first time I even learned about Cushings my muscle wasting had me only able to lift about 10 pounds. I still wasn't sleeping. I was angry at nights and had so much anxiety that my foot would tap tap tap all the time. I was bruising if someone touched me hard or bumped me and most of all I was depressed because I felt as if my family would do better without me there. I am a mom of four teenagers.....it was hard when I couldn't do things for them. And I felt bad that my husband was really picking up the slack. I didn't even feel like ME anymore:( I wanted ME back. I wanted to ride my horse, shoot my bow, cook dinner and be able to move the pot of spaghetti etc. BUT NOW I HAD THE CHANCE!!

July 25th 2015 I had my surgery.   I was ready to jump up on the table to have my brain tumor removed. I had a calm that day and was prepared for it. My husband by my side and I waved at him and said "see you on the remission side". When out of surgery we were told that they had found TWO tumors that were connected underneath the pituitary and he felt they had gotten everything out. I was relieved.....

On our next blog is the video of a day before to 2 weeks after slideshow of pictures of my surgery. I am now 2.5 months post op and in remission! I take it day by day because recovery is hard and I have to remember that I am not going to be ME in one day! But glimpses of ME are coming more and more! I feel happier, I have lost 23 pounds, I am sleeping every night and all night long, I am not bruising, my brain fog is so much better and I am happy to be on the flip side~! I am still getting better day by day! 

Please feel free to email me at anytime at Cushingscountrygirl@gmail.com or I have a Facebook group called "cushings!!" that you can join for more information and of course check out Vans other blog onedelicateheart.blogspot.com 

 

cushings surgery pituitary

Van's Introduction to Cushing's

Hi guys my name is Van. I am 25 years old living in Houston TX. I got a degree in Fashion Merchandising during the time I was sick with Cushing's Syndrome but now I want to study creative writing. I live with my loving boyfriend (Muffin) and my two adorable pups Vankey and Rascal. I enjoy eating good food, I am a shopaholic, fashionista, and love to travel. I have my own blog called http://onedelicateheart.blogspot.com that blogs about my journey and to raise awareness.

Muffin and I High school sweethearts

Rascal and Vankey

I had cushing's for about 5 years before getting a true diagnosis. Most doctors ignored me because I did not look sick enough or Cushinoid enough due to the fact that I did not have a huge weight gain (though 25lbs is still a whole lot for my frame). Last year my period stopped for a full year and I had extreme cystic acne all over my face and neck. I still had the moonface, insomnia, fatigue, hirsutism, hairloss on the head.. The whole deal. My depression and anxiety became so severe that I wanted to end my life many times. People could not understand what I was going through and doctors ignored me. Finally I had a moment of realization googling my symptoms and WEBMD said Cushing's Syndrome was possible. My boyfriend and I laughed it off because it said "rare disease" so we took WebMD lightly. Still, I felt that I needed to checkout my hormones so I went to see a endocrinologist. After many tests, labs, scans... Last year I was diagnosed with an adrenal tumor. To my horror the doctor said I was pre diabetic and needed to take action immediately. I had surgery (adrenalectomy) which removed my whole right adrenal gland that had the tumor in May 2013. It has been a year and I am still in Recovery which means that I am waiting for my remaining adrenal gland to start producing vital hormones. I take hormone replacement called steroids for the imbalance.

By looking at me I seem to look pretty normal, but I still suffer greatly everyday now that I have Adrenal Insufficiency. I am tired, depressed, and lack appetite. My periods came back and now it is gone again. My symptoms have improved but thing's are not how they use to be. My quality of life has changed greatly. You can read more of it on my blog. It is just part of the rollercoaster we Cushies have to deal with in our journey. Though everybody's journey is different and unique. 

Cushing's has taught me so much and I hope to pay forward what I have learned to the public. Keep reading and we will go into depth in our next few posts. Our main goal is educate people on how complex Cushing's can be. Also that one day the world will understand what this mystery Cushing's is all about and people can be treated and cured before it takes away too much of their life.

When I met Rae, we immediately were on the same wavelength. Mostly by the fact that she already recognized me by my videos on youtube and she is such a genuine and sweet person. The interesting thing is how we both suffer from Cushing's however we have opposite symptoms.. as you can see in our "during" photos we look quite different with our appearance and symptoms. We will make a chart and compare our different symptoms. It just proves to show that you cannot judge a cushing's patient by their appearance. I hope that this blog will be useful for other cushies like me or Rae. We will continue to advocate for Cushing's and will be 2cushies for life. :)


Here are my videos please watch fully on youtube to see the captions and comments. Please like and share if you think you may have cushing's or share to someone you know. Thanks for reading! Let's get this started Rae!!

 

Cushing's Video Part 1

 

Cushing's Video Part 2 (recovery)

 

                                          My acne Video

Rae's Intro to Cushings.....

Hi! First off I would like to say thank you for even reading this! I hope in some way the posts that we do will help you in some way. I wanted to introduce myself.......

My name is Rae Collins. I am 38 year old married Cushings lady with four teenagers. Yep, you heard me right...4!!! I have three boys and a lovely girl. My life is very busy just with being a mom and a wife. I live out in the middle of no where. Adin, Ca where their is only 250 ppl and live on a ranch with miles upon miles of acreage. I am however a world traveler and love to see and experience new things as my father was in the military so I was able to visit 22 countries growing up. I have the best of both worlds.  Cushingscountrygirl@gmail.com is me......

I have had Cushings for well over 4 years now. I had tons of symptoms....weight gain, brain fog, couldnt sleep, high blood pressure, straie, hair on my chin and face, losing the hair on my head, muscle loss, bruising, thin skin, pain, anxiety, depression, mood swings among other things. But these didn't happen all at once. I did not end up getting osteoporosis or diabetes.

After my kids

185 pounds and 6 feet tall

When I first started getting symptoms

Not everyone has all the symptoms....which is one of the reasons that my co-blogger and I decided to do this blog. To show two sides of the story (journey). We are so different yet we have the same struggles.....

2 months post op with my co blogger! She is amazing!!

My amazing husband and I ...2013 260 pounds

Right before surgery in July 2014 top weight 320

Fast forward to now....I am 2.5 months post op from a pituitary surgery which took out two tumors that were close to my carotid  artery. I am now in remission and slowly daily I am recovering. Its a slow process but its on the uphill side so I am very happy. Changes have already happened in 2 months. I have lost 20 pounds, I have way less brain fog. I am now able to lift almost 30 pounds at once when before surgery at most it was 10 and it hurt my arms to brush my teeth or hair. I have a better mood and anxiety is gone! Gone I say! and YES I AM SLEEPING!!!

This blog for me is to tell you about my Journey and to have a place to say my thoughts and feelings. I want Cushings to be more known. Advocate for it! There can be a light at the end of the tunnel! We can live with Cushings in some way. It may not be easy and I know its very debilitating but to have hope is what I wanted.....and hope....is what I want to give!!! #cushings #cushingsdisease #raredisease #2cushiegirls #post-op #journey #Pituitary #Adrenals #surgery #recovery

 

My first video just found out about cushings

 

Me post op 9 weeks