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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(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

Insomnia! and Cushings

Insomnia and Cushings. There are many symptoms of Cushings but one symptom that seems to really bite me in the butt is Insomnia. For instance its 4:50am and I can’t sleep no matter how many sheep I have counted or how many times I have tried to be lulled to sleep by my husband’s soft snoring.

I am lucky that I have teenagers and its summer. I don’t know what I would do if I had little kids. I mean I am practically falling asleep when little ones would be waking up. Thankfully my kids are old enough that I usually make them breakfast. Leave it out with a note and tell them when I went to bed so they know if I slept that night or not. I usually see the beautiful sunrise and then start to yawn finally.

I have Cyclical Cushings. I have had two tumors on my pituitary and had them removed at MD Anderson just little over a year ago. I was lucky enough to go into remission for a short amount of time. I am blessed because I became stronger, slept better, lost weight, lost my buffalo hump and all my symptoms started to disappear. Now a year later I am retesting because about 3 months ago I started noticing huge changes again. All my symptoms were coming back and with a vengeance. My new Mri showed a new tumor and every single one of my tests have come back with high cortisol.

So why am I awake? Well I will tell you why. Normal people who do not have Cushings get a rush of Cortisol in the morning to wake them up. It’s your body’s natural response. It’s a hormone that helps you to wake up and to get on with your day. At night time it disappears unless maybe you are feeling stressed because it is the stress hormone. When it disappears you become tired and can fall asleep.

Then there is me. The crazy lady who is cleaning the house at 2am, making breakfast for my kids at 5am for them to warm up, making sure all the laundry is done and blogging because I can’t sleep. Cushies have the opposite happening to them. Cortisol is released at night time so I can’t fall asleep no matter what I do. I have tried to lay in bed for 5 hours and just stare out the window. Nothing. Nada. Nope! Cortisol gives you that surge of energy. It’s like a drug that makes you antsy, angry sometimes, have anxiety, it’s like a thousand volts of energy running through your body or a bear chasing you. It is called fight or flight. It’s not a drug though. It’s something every body creates but my body apparently doesn’t know that it needs to be a part of the in crowd and GO TO SLEEP! Now tell me…..could you just lay down and sleep if a bear was chasing you? If you said yes…..you must have narcolepsy or something.

Anyways because I cycle I have days and I do mean DAYS of insomnia. I will sleep roughly 2-4 hours a night. Let’s be real though I should say I sleep 2-4 hours in the day because my body finally lets me fall asleep around 6-8am. I am blessed because my husband helps out and my kids sleep in when its summer. Once its school time they get up at 615 so I make breakfast and off to school they go. That is finally when I get an hour or two in. My cycle goes about 5 days. Then I crash and want to sleep all day long if I could. I don’t because I have responsibilities but I wish I could.

Hey I am 39. It’s not like in my 20s when I would stay out all night long, get couple hour’s sleep and then go to my 8am college class. I could bounce back easy AND I was doing it on purpose. Now I am 39, not doing it on purpose and definitely cannot bounce back easy ha!

It can get to you too. Not having a lot of sleep would make any saint not so saintly. Trust me I can get cranky even though I try my hardest not too. I have looked at my husband who I love dearly and thought about pushing him off the bed (okay it was only once I thought that but it did cross my mind) because he was sleeping TOO peacefully ha! This is one of the symptoms that I was SO RELIEVED I didn’t have after my first surgery. I almost could deal with the 100 pound weight gain from this hormone, loss of hair, bruising, depression, buffalo hump but insomnia is one of the top three that I just could never get used to and drove me nutso. Kind of like tonight. Day 2 of my cycle and not even happy that I probably have 3 more days to go.

I am blessed that anytime I am tired my husband is more than happy to help out and let me sleep. He understands which is very helpful. I also have tried to turn this insomnia thing into a positive. I can’t sleep and I am antsy. My legs hurt so bad that they need to move a lot. So what do I do? I clean the house. I catch up on my laundry (hey with 6 of us there is always laundry). I read books. I do paperwork. I do a lot of praying for others. I try to at least take this time and use it constructively. I have learned that me laying there staring at the clock is not helpful. I get more upset and that doesn’t help out especially because it’s a stress hormone. Don’t need to add to it.

Cushing’s is a crazy disease! Tomorrow I have my doctor’s appt and will find out my next steps since I have another tumor. I am not going to let cortisol win! I won’t let Cushing’s win! I just won’t. I can’t! I am going to go into this again with a more positive attitude and know that I can and will do this. I am stronger because of all that I have gone through. I also have a very big mouth so I hope that I am able to reach out and help others as well. It’s important for me to use this for good. I am sure though if I was writing this on the 5^th day of my cycle of no sleep that I might have a little different wording of things. I still will be saying though that I want to help others and I want to TRY and stay positive.

Don’t get me wrong. I am scared. No one wants a second brain surgery. I worry about finances from going from California to Texas. I worry about my kids. I worry about my husband taking a week off of work. I worry about a lot. I just have to take those worries though and save them for another day. Its not going to help me out right now. Instead I will just continue to pray that things will work out. Trust in my surgeon and go into remission again. This time forever. If it doesn’t happen……I still have a lot of fight in me and will continue till it does. There is a reason I am going through this and I am going to use it for good. Cushing’s sucks but I am going to beat this! You just wait and see!

 

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