Remission, MY RANT and help

It’s been a crazy good month since my Brain Surgery. If you don’t read my blog often I am in remission from Cushing’s Disease. It’s a Disease that over took my body. Gained 120 pounds, lost tons of muscle and have hard time walking sometimes, ended up being pre diabetic and had high blood pressure and the list goes on. All because of a tumor that grew on my Pituitary in my brain.

Just as I started writing this blog about my recovery and how tired I have been I got an email from my Doctor with my results for one month testing. I am still in Long Term Remission! I literally stopped typing, took a deep breath and started to sob. In a good way!

You see this is my second Brain surgery in two years. Recovery is long and hard but worth every minute of it. I got from never sleeping before to always wanting to sleep. I go from no pain to being in a lot of pain. Sounds opposite right like I should be upset that I am in more pain or so tired I can’t keep my eyes open after 9pm but its remission! It’s my body starting to recover and starting to get stronger.  I was in remission the first time but it was partial so it only lasted 10 months. I was happy for that too as I could get stronger. This time I knew though that when they found another tumor if they didn’t get it out that I would be on medicine for the rest of my life and not be in remission. This was something I dreaded and did not want.

I am in remission. I am in remission. I have to keep saying that to myself. I just can’t believe it still. I am going to slowly get healthy and happy with my body again. I am so thankful for everyone’s prayers and thoughts for me. It’s been a long hard road and I am thankful to be on the other side. Now my thing is to continue to help as many people get to that other side also. Cushing’s is not an easy disease. Tumors are no fun especially when you have a Rare Disease that makes it so you don’t get diagnosed right away. Did you know the average person getting diagnosed for this is 8 years? 8 years! It’s too much damage on a body. I have had it at least 5 years now and finally got the right diagnosis and 2 surgeries later I am finally on the other side.

Cushing’s creates your body to go crazy. Weight gain, Buffalo humps, Moon faces. This is all caused by excess amount of cortisol in the body. It’s not because we are fat or lazy or eating too much. Let me show you an example. Here are two before and after pictures. The ones on the left are the day before my surgery. The ones on the right are my one month mark (in the pink sweater). Do you see the change? I did nothing different that I normally do. It’s just the tumor is gone and cortisol is not sweeping through my body like a crazy person anymore. Did I eat less? No. Am I exercising? No. 3 out of the 4 weeks I was in complete bedrest so definitely not exercising. I guess the one thing I want people to know is…

When you look at someone just know they might have an issue. It’s not always their fault why they look a certain way or act a certain way.

This disease has created me to have to be humble and to really dig deep within myself to keep the real me still there. It’s not easy when you gain 120 pounds in 2 years. No matter how much dieting and exercising I was doing. It’s not easy to lose your strength and have to ask your husband or kids to lift something for you because you can’t do it. Not because you don’t want to do it but because you literally can’t because of the muscle wasting. It’s not easy for your body to start doing crazy things like not let you sleep or make it look like you don’t have a problem because one day you feel totally fine and the next day you don’t want to get out of bed. Let me rephrase that. You WANT to get out of bed but you can’t.

I am so thankful for my friends and family. They have supported me like no other. Sad fact is there are so many people going through this or similar stuff like this and they don’t have that support system. That’s why I created the group “Cushings!!” on Facebook. A place for people who have been diagnosed, are searching for diagnosis, trying to learn about Cushing’s or are in remission or out of remission again. Everyone needs that support system. I promised myself the first time that I went into remission I would dedicate a part of my life to help others with this. Am I a doctor…..not even close. I am however a friend who wants to help. So if you are reading this for the first time and you want to talk ….I am here for you! I will always get back to you even if it takes a day or two. You do not have to be alone.

As always I started this blog going in one direction and ended up going in another. This is how you know my heart. If you are someone needs a friend to talk to about Cushing’s feel free to contact me.

You can email me at Cushingscountrygirl@gmail.com or Join my facebook group “Cushings!!” and private message me at any time and also get a lot more supporters in your corner! Lets not do this alone. Its not easy, I know…..so lets do this together!

 

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