Friday, October 24, 2014

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 

 

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