Imprisoned? I am breaking out!

For three weeks I have been imprisoned to my bed! Ok its not THAT dramatic. I had two surgeries on October 1, 2015. Pituitary Surgery to remove a Brain Adenoma and then sinus surgery. It was a two for one special. Since I had both surgeries the doctors told me strict bed rest for three weeks.

Its week 2 and 5 days! I cant do it anymore!!! Its funny how people will say to me that they would love to stay in bed for three weeks. It drives me totally crazy. There is only so much cooking channel (which I love) and being on Facebook that I can do without going mad insane.

So I decided today that I am going against the system and being a rebel! By being a rebel I mean sitting in other places of my home and taking a cart ride to see all my animals that I haven't even seen  (besides the dogs) since my homecoming. Don't worry all my babies have been well taken care of by my family.

I have to admit if I am going to be stuck in bed its nice that I haven't had to worry about cooking, cleaning or laundry. My MIL has been here with us helping and making delicious meals each day. I told her that she is acting like she is our maid. I hate that but she said she is bored and likes it. Makes me feel bad. Even though I appreciate it a lot! We couldn't do it as easily without her being here. Makes it so Ryan can work and the kids still are under watchful eye of all of us.

So today I am being a rebel. Tomorrow you will get great pictures of all my  fur babies! I fully know that I will tire myself and want my bed back by midday. Mil and Ryan are letting me up and about....we will see how long it lasts. I think I can at least make it till noon! Ha!

Its pretty bad that at 39 being a rebel for me is getting out of my bed. One more week and 2 days and I will be all over the place so watch out people! :)

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(Caution Pics) Cushings Surgery

Deep Breathe! Deep Breathe! In just a couple days I am leaving from California to Texas to go and have my second pituitary surgery. Drat Tumor! This time its a little easier on my mind and my body because I have done this already once. I don't have the anxiety of the unknown this time.

In July 2014 I had my first pituitary surgery. They found two tumors and got all of it out. I was able to go into remission which was fantastic. 10 months later I had another tumor in a different spot on my pituitary.  Its a slow recovery process. I will be in the hospital for 4 days if all goes well. Then I will be able to fly back home on day 7. I am praying that I go into remission again. From all that I have read and learned your second surgery is 50/50 on that.

Some may think that its an easy surgery because you look pretty normal within a week. That's because its a Transsphenoidal Surgery and they go up your nose, through your scull to the pituitary that way. It definitely beats them opening up your head. This doesn't mean it isn't a brain surgery though. The doctors ARE going into your Brain.

Recovery can be very long. If surgery is successful you will feel like CRAP. This is something you actually want. It means your cortisol levels have dropped down to normal levels of normal ppl. With having high Cortisol it is affecting our bodies in so many ways. Not having it all the sudden is like a body going through drug withdrawal. Except this "drug" is actually a hormone that our bodies have been creating too much of.

My tumor is only 2mm by 3mm by 3mm. Small right? So why would it be a problem right? Well it reeks havoc like nobodies business on my body. I have lost hair, grown hair in weird places, gained weight, lost strength, have horrible insomnia, bruising, mood swings and the list goes on. All from this little tiny tumor. Most MRI don't even show them that's why you have to get a T3 Mri.

Well in less than a week I will be having this surgery. Like I said I have done it before. I still have some pictures from my first surgery so I will show you. I probably wont be blogging for a week or so as I wont want to be starring at a screen as much. I would super appreciate any good thoughts or prayers for remission and a fast recovery. I want to beat this....once and for all!

going into surgery

just out of surgery

3 days later husband being supportive

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!