Cushings....Its BACK:(

I kept it a secret from everyone but my husband for almost 6 weeks. Then I decided I really needed prayer so decided to tell my friends and family. I am going to use my blog as an outlet today so turn away now if you don’t want to hear.

Its back but I am going to fight it.

Cushing’s is a rare disease. It is a condition that occurs from too much cortisol in the body for a long time.  I beat it once! I had pituitary surgery and went into remission 11.5 months ago. They took two tumors out and every day since then I got better. There are a lot of symptoms to Cushings like anxiety, depression, gaining weight even while dieting, insomnia, bruising, hair loss, facial hair growth, libido gone, bruising, high blood pressure, diabetes, buffalo hump, acne, loss of muscle, irritability, pot belly, round face and swelling in extremities. Basically it sucks!

From Novartis.com

I was in remission for about 11 months. I don’t know yet if my tumor is back or if cells were left behind that created me to get better and then 6 weeks ago for my symptoms to start crashing back into my life.

I went after surgery from only being able to lift 10 pounds due to muscle loss to being able to lift 50-60. I slept all night, I lost some weight, wasn’t irritable, bruising and hair loss stopped, Blood pressure went down to normal, buffalo hump got smaller and swelling stopped. It was the best thing I had ever done getting that surgery.

Now it’s back. Thankfully I had the time to be in remission to grow my strength back. I feel like God gave that to me so I could help others, learn more and get better. I am thankful because I can’t imagine going through this after surgery not being in remission as many people do. They have my heart because they are the ones that have to fight so hard.

Let’s be honest now though. I am using this blog as a way to think out my feelings. I am scared. I don’t want to do this again. I don’t want to put my family through this again. I don’t want the surgery again. I don’t want the symptoms again. I just don’t. Life isn’t that way though so I am going to have to do it again.  I am not having all the symptoms yet but I have high blood pressure again, brain fog, losing hair, sleep patterns are crazy, bruising, depression and anxiety and swelling.

Before I started gaining the weight

After surgery losing the weight

I am going to do this though with positivity. I am lucky because I know so much more now about diagnosis and how to get it. I am able to do the numerous tests and know what I will have to go through. I know what lays ahead of me. It might be medicines to control it if a tumor doesn’t show up on MRI, might be another pituitary surgery, Radiation or even a BLA. The one thing I do know is I can do this.

Before surgery

Two tumors out through the nose. (my supportive funny husband)

I don’t worry about myself or another surgery. I worry that I will be irritable and not be able to control it. People don’t understand that cortisol is like fight or flight in a person. It gives you the “feeling” of being chased by a bear. I don’t think that many people would be calm at that point. I worry that I will lose my strength or I won’t be able to sleep. Those were my main things I hated. The weight gain is horrible but it’s something I can deal with. Bruising I can deal with also. Anxiety not so much. Pain not so much.

Again though! I can do this! I have one of the best Endocrinologist in the world. He is the leading specialist in Cushing’s and I fully trust him and will follow what he tells me to do. For now I will put myself in God’s hands and in his hands.

I kept this a secret for 6 weeks. For anyone who knows me knows that is hard for me to do. I wanted to make sure though before spouting off about it. A good friend of mine is out of remission too. I just kept praying for her. Its weird how that happened but in a weird strange way it’s comforting that we can at least talk about it. When she told me about herself….I already thought I was there too but still wanted to wait till my doctor told me before telling the world that this is happening.

I know this is all over the place but I guess I was worried most about my Facebook group Cushings!! Where there are 1100 Cushing’s patients on there that I try to help. They all know I am in remission and I didn’t want to have them not have hope. I was worried about letting them know. Scared actually because I want them to know there IS hope and there is a light at the end of the tunnel. I have grown so much in the last year. I have gained knowledge, found friends, lost friends, knew who really had my back and who I could trust. This disease to me helped me I guess. Helped me to know what was really important in my life. My family, my friends, and my animals.

This time around…I know more. I am going to beat this! I am going to fight until I am in remission again. I am going to stay positive along the way. I may have my bad days but I will have 99 percent more good days. I am going to take Cushing’s and say goodbye to it once again…..forever! I am going to beat this! You watch!

 

If you want to know more about Cushings or see real people with real stories, blogs, videos etc look at www.cushingstories.com . If you have Cushings know there is support out there and also financial help. Email me anytime at Cushingscountrygirl@gmail.com and I will help you in any way that I can!