Cushings is gone forever

I have been missing for a month. Yep a whole month. Bet you thought I would never blog again but then whammo here I am writing once more. I am going to imagine applause in my head. Why not right?

Lets get started. As most of you know I have been suffering with Cushings for many years. I had my first pituitary surgery and went into remission for 8 months. Then the tumor was back in full force. I had my second pituitary surgery and I got better for 2 months but then my numbers for cortisol weren't good so I knew I wasn't in remission. I cannot even tell you how much of a blow that was to me. Back to the doctors again and decided on the very drastic surgery of taking my adrenals out so I will no longer have Cushings ever again. Its not a surgery you can start off with at all (in case you were wondering) as it makes it so you will had Addisons (produce no cortisol at all which you need to live).


So Feb 25,1016 I became Cushings free! They took out my adrenals and I am now steroid dependent for the rest of my life. Its been almost a month and I am still recovering as one side they did laparoscopic but the other side had trouble and had to open me up. I have to lay down  A LOT and sleep A LOT now too.

They believe according to my organs (that are twice the size of normal ppl because of excess cortisol) that I have been dealing with this for 10 years. I have only known myself though for about 3-4 years. There is a lot of why I decided to do such a drastic surgery but I can put it into two simple pictures. Here is Cushings Symptoms and here is Addisons. Which would you choose. Plus Cushings I CANT control. Addisons its all in my control.

So its been a month. Things are getting so much better. Today I weighed myself and I have lost 40 out of the 120 pounds I gained on Cushings. One month!! I feel so much happier. My blood pressure that was high and erratic is now normal and perfect. I sleep. I sleep a lot actually because I am still recovering. It takes 6 weeks for an open surgery plus withdrawals from Cortisol that I had 4-8 times the normal amount. Each day I am getting better, stronger and happier! Once I am up and about more WATCH OUT WORLD because here comes Rae-Rae! For the next two weeks though my bed and I will still be good friends!


So that's my short story to catch everyone up. Now I can get back the daily program of good blogging:) Funny weird stuff that is always happening in this house like when I heard one of my boys say this week that when they were little they peed in their own eye.:)  Love you all! Its good to be back!


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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

Swaps and Pituitary Surgery

What do you do when you have 7 days till Pituitary Brain Surgery? Well you do a SWAP of course!

Some of the items I sent to UK

In one week I will be going to Houston Texas to MD Anderson to have my surgery. I had this same surgery 14 months ago also. I have Cushing's which is a Rare Disease. Cushing's makes you gain weight, have a buffalo hump, moon face, striae, insomnia, mood swings, muscle loss, bruising etc. Sounds fun right? NOT! I have a pituitary tumor that creates too much Cortisol in my body. I had two tumors over a year ago. Had Surgery and went into remission for 10 months roughly before I ended up with another tumor. I am going to fly from California to Texas (halfway across the USA) because is an amazing hospital and the Surgeon does these surgeries all the time.

Pictures of my last Pituitary Surgery

I have had a headache now for 10 days straight. Last night was the worst but its starting to go down a bit finally. Some people might get depressed waiting for the surgery to cause them remission again. I have decided to have a little bit of fun instead. Let me tell you about it.

A Cushie friend of mine Carly and I have been talking a lot during the night when I cant sleep. She is going through the same things that I am. She told me about this International Swap Group and how fun it was. I told her I would love to join. The jest of it is you swap things from your country to their country. Things they are looking for or are interested in. The first swap is 50 dollars (USA) and then mailing the package. You get one swap partner. Send out the package and they send you one from their country as well.

Lesley chose me. She is from the UK. We started talking, took this detailed quiz of our likes and dislikes and asked each other what would be fun to swap. We both went to our local grocery stores and took pictures of things and sent them to each other to see what would look good to us. Along the way we talk and learn about each other. I have found out that she is an avid lover of animals like I am. We actually have a lot in common and talk a lot. We even send each other sneak peaks of what is in the boxes. Its interesting to see what someone would want from the USA. Bath and Body works is something that is really wanted. Along with MAC and Ulta or Sephora make up. You chose a day you are going to send and then both send at same time. Once that swap is complete and both people have their boxes then you can chose to swap with someone else.

Some of the goodies I am getting I am so excited!

I like the fact that they have a detailed quiz and lot of rules to the group. This helps with getting things you like and not things you dislike. For instance I cannot stand the smell or taste of watermelon. It would be disappointing to get things that are all watermelon. I like that I can get postcards for my kids and also learn about the country through that person. Its so fun!

It is good timing too. When I get back from surgery I will have a box to open. How great will that be! I will be in bed for quite some time so the snacks will be helpful and just the fun of having mail. I really love to get old fashioned mail. Makes me feel really special.

I am actually doing another swap with a friend that's off the group just to have a little more fun. I think my favorite part of it is trying to surprise them with goodies. I love shopping for others! Its so fun! Since we live in a rural place though I think my post office had a learning lesson on how to ship fast to another country lol.

This is my new hobby that I am going to just love. I think its great for my family to try new things also from different countries. I cant wait to swap with France or Australia. Pineapple lumps look really good and I want to try some :)

If you have the money or the time to do a swap I would totally suggest it. Its good clean fun and you get to meet some fantastic people! Hey....If you ever want to do a swap with me...I would love that too!

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