Superhero vs Zombie

Superhero vs. Zombie this is my life lately. I am excited that in two weeks I will have my last surgery and finally be done with Cushings for good. Its a drastic surgery but its so worth it.

So I do this cant sleep insomnia thing at night. I think in the last 5 days I have had a total of 12 hours sleep. Cortisol runs rampant through my body at night. Right when I think I am going to get tired I actually amp up. That is because with Cushings I have the opposite Dural rhythm than most people do. Normal people your cortisol wakes you up in the morning. When you go to sleep the cortisol has dropped to zero and you sleep. With Cushings your cortisol is high at night instead of at zero and no matter how much you WANT to sleep....you cant.


Insomnia is my worst symptom by far. On Feb 25th however that will be gone forever. I am choosing to do a dramatic surgery of taking my adrenals out. I will no longer even create cortisol. I will have to give this hormone to myself daily to live. This is the trade off. I am willing to take it though so once again I can be "normal" for my family.


This is things I do when I cant sleep or am in a Cortisol High....

Its like I have excess of energy and if I stop moving I will feel frustrated. So I cook or clean or read or clean some more. I am sure the kids love waking up to a super clean house with all their laundry set out waiting for them. Maybe they don't even notice I don't know ha! Once I made 10 casseroles for surgery while I couldn't sleep. Keeps my hands busy and kept me going to do something constructive. This will help us afterwards on days I don't feel like cooking. Also help MIL the 9 days we are gone on the days she doesn't feel like cooking.


Then like today after 5 days of not sleeping I am beat. I still do everything I need to like laundry, picking up kids, feeding kids but I am exhausted. These are the days I wish I could sleep more and if I have the chance to nap I do. Life still has to go on no matter if I am sleeping or not. Kids and Animals need to be fed and nurtured:) It might be a pizza day on those days however. Or a good easy hearty soup from scratch. Something simple. These are my Zombie days.


I am sure normal people without a Chronic Disease have these days too. Super hero to Zombie days. I am thankful though that in just a couple weeks I will be back to the Super hero all the time days. I never miss a big event no matter what but now I can stop missing those small events too. AMEN!


I want to thank everyone who has supported me and my family through this daily. Thank you for the prayers and all the wonderful feed back I get daily. I love you all!


There is a lot to look forward to this month. In just a couple days who of my kids are Homecoming Attendants. Then we have Senior Night for my oldest last basketball game. Sadie Hawkins Dance after. A four day weekend. Valentines day. My oldest is turning 18 (Yes I am so old!) and we are having a fun weekend away. Then my surgery. Its a busy month but a good month. Those are all the big moments I wouldn't miss for the world. Not a chance! Cant take that back when they are older and looking back on those moments. So for this rest of the month even if I feel like a Zombie I am going to put a smile on my face because I AM truly blessed and be the Superhero.


Subscribe to this blog by typing your email up top. Or you can subscribe by Google+ or Bloglovin. Have a very blessed day!

My BIG Decision

Have you ever had one of those decision that will impact the rest of your life? Besides having kids ha! I haven't been writing for awhile which I am truly sorry for. I have all these great intentions and even think "I need to write a blog about this" but then sadly my fingers haven't made it to the keyboard.

In our family we have some pretty big news. I wish it was better news like we were having a child or something or I got a new fur baby yet again.


After my second brain surgery I went into remission. Everything was looking up in the world. I started losing weight, was feeling better etc and then I started to notice month 3 that small things were happening again. Did some testing and I am not in remission.


I am not a candidate for a third surgery. I went to the two best surgeons in the USA. When you do that there isn't much chance they are going to find something again. Let alone maybe one cell that was left behind. I do not want my whole pituitary taken out because then I am dealing with 11 hormones for the rest of my life. That isn't something I want for myself.


Cushings has been with my body for a long time. It makes you feel crazy sometimes too like you are a hypochondriac. Like "do I really have this?" or "Am I just crazy?". Its a disease  that I wouldn't wish on my worst enemy. It robs you of so many things. Your body, your health, your life . So now I sit worried what are we going to do? I cant have this rob me for the rest of my life.


I have truly amazing doctors. One is my Endocrinologist Dr. Cohan. He is this amazing guy who even when he is telling you bad news he says it so gently that it hasn't sunk in till you are in the car. HA! That is a Doctor that I want on my side. He gives you options. He doesn't push you on those options either, which is what I expected but it never happened. He educates you on each thing and lets you do whats best for your body and you.I had a couple options. One of them was taking a Cortisol Blocker Drug, one was taking out my Adrenals and one was Radiation which we both didn't really agree on.


I chose probably the more drastic one. To have an Bilateral Adrenalectomy. This is not a decision I took lightly though, as it will be something that gives me Addison's Disease for the rest of my life.

What is Addison's disease? (taken from MedicineNet.com)

 The disease is characterized by weight loss, muscle weakness, fatigue, low blood pressure, and sometimes darkening of the skin in both exposed and nonexposed parts of the body.


Its something that I really have to watch and will be dependent on Cortisol for the rest of my life. One thing that used to be my enemy is now going to be my friend. Where stress whether good or bad will cause me to have to monitor in my impute even more.


I personally just don't want Cushings anymore. I feel like I have taken the steps to get it out of my body. It makes me feel like I am not living my life the way I should and always have. Cushings in some way has robbed me of who I really am. I always try to be VERY positive on things. This disease has worked on me and my positivity. I will not let it win though. I just wont.


I have more tests to take to make sure that this is without a doubt a reoccurrence. To me that is a good doctor. I am about to do something pretty dramatic by taking out both my adrenals. I remember sitting in the office with him, I started to cry (which I hate to do in front of people). I asked him "Are you sure that I have Cushings? Is there anyway I could possibly have anything else". He looked at me and I already knew my answer.


I have a lot of faith in my Doctor. I know this is not always he case with those who have Cushings. I am lucky enough to have always had good Doctors along the way. Blessed really. He is someone I completely trust. I know he has the skills and the energy to deal with me. He gets back to me right away and doesn't let me stress even further. His office staff is great. That's a bonus too! I had an amazing Endo before but I knew when I went to Dr. Cohan that it was someone who I wouldn't be leaving. When you trust in your Doctor and can have a good working, professional relationship with him....it really helps!


So at the end of the month pending my tests I will be going in for my BLA. Cushings will forever be gone. I will not be able to produce ANY cortisol. I wont be sad its gone! I will be throwing a party (ok maybe after recovery haha). I know it wont be an easy road as I will be Adrenal Insuffiencty and have to really watch that. I think that is something I can manage though with diligence and paying attention to my body. I have to manage it. I will have no choice.


I am ready to go to the next Chapter of my life. I am ready to live a better quality of life. I turn 40 weeks after my surgery. Its like the best present in the world to me to not have Cushings anymore.


It took me a long time to write this as I was almost afraid to put it out there in the world. Gods got my back though and Dr. Cohan. I am thankful and in my prayers each night I thank God for all the people in my life who give me strength and support. My friends, family and Cushies always surround me with love. I am so thankful for that!


I don't talk about Cushings a lot on my blog as its a personal blog about Ranching, my Teens, my Family and our life. Cushings has been a big part of it though so you will see some posts throughout the year. Soon......you might never hear the word be uttered out of my mouth ever again:) And that folks makes me ecstatic!


Subscribe to this blog by Email, Google+ or Blogloving. Have a blessed day!

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!

 

Subscribe to this blog by going to the main page and putting in your email. Have a blessed day.

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!