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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I have a BIG mouth

I have a big mouth! So many times this week did my BIG Mouth help me though? I spent 5 days in a hotel this week with WIFI and a Jacuzzi. Sounds divine huh? Well I spent it half way alone, peeing in a jug, getting my blood drawn and not sleeping. When you live out in a rural place having WIFI is a treatJ

I went to stay at a hotel because I was testing for Cushing’s again. A Rare Disease that creates too much cortisol in your body. When I am in a “High” of this thing my body is creating I don’t sleep, I gained 12 pounds in 5 days, I am irritable (wouldn’t you be with 2 hours a night for days?) and my whole body feels like its under attack from stress. I had 12 tests and an MRI to complete so I decided I would stay in Redding to do them. Hey they have a Jacuzzi in the room (free upgrade got to love that) and baths help my super antsy legs during a High. Its important for me to test ONLY when in a high however so I went there to stay so I didn’t have to drive 2 hours there to drop off labs and 2 hours back every single day with no sleep. Ryan and I decided it was a good idea. This time around I told him I could do it by myself because someone had to work and take care of all of our animals. He called and text me all the time to make sure I was okay.

I decided I wanted to do this by myself this time. I didn’t want other people’s schedules to have to change. I couldn’t sleep anyways so being able to bathe or watch tv or yell at the pillow for not letting me sleep is more conducive to when you are alone.  I kept my chin up and told myself I can do this! I can do it alone! I am not scared like I was the first time around because this is a reoccurrence. I don’t need the hand holding as much. My MIL told me she would come up and stay with me but I declined. I get irritable and don’t want to take it out on anyone without knowing. Ryan would have done it too in a flash but I thought it was better for him to continue working. I will need him later for sure.

So, How is my mouth big and how did it help me numerous times? First I would like to say that when you are on day 5 of 2 hours of sleep and going to get lunch and bring back to the Rapunzel tower (what I called my hotel room since I locked myself away) the last thing you want to do is be scared. So I was sitting at a stoplight waiting to turn to go back to the hotel. A guy in a clown’s outfit that was looking pretty jittery started walking like he was going to cross the street. He came up to my car door, started pounding and trying to get into my car saying he needed a ride. I started screaming at him (swear my mouth was completely open screaming) and honking my horn over and over. Thankfully my car doors automatically lock. That scared me so bad that I wanted ruby red slippers to click two times and send me back to my little rural town of no clowns or drug addicts! Who was the first person I called? My husband lol. He told me to call the police. Thankfully this happened on the 5^th day when Ryan got a person to watch all our animals and it was the weekend so he could come up. I am thankful he came up that day. Besides missing him…I secretly was happy to have my protector!

I decided since I was up for days that I wanted to use my Big Mouth for good. I did a couple VLOGS on symptoms and also ones on where to find support for Cushing’s.. Might as well use what is going on with me for good. I really want to help others. It’s the one thing that makes me feel okay about having a reoccurrence and Cushing’s again. I feel such immense support from my Cushies too. They help me on a daily basis. Here are the two links to see the videos that I made.

https://youtu.be/9yBUYYIEkS8 Cushings Symptoms and my Symptoms

https://youtu.be/dfXx18pYInA Where to get support

https://youtu.be/PhIfFwHKChU When to test

I did have fun being able to connect with Cushies online and laughing with things that weren’t medically related. I was excited I had Starbucks! Hey we live 70 miles from the nearest Starbucks. I am not going to lie I had taco bell salad bowl twice too! My son Jackson would be so proud because he loves Taco Bell and I generally am not a fan. I did read a book and do a lot of Jacuzzi tub relaxing to try to help me sleep. I am thankful I have such support from my friends and family. I guess I say to myself I am doing this alone but I am nowhere doing any of it alone. I have a lot of support. If I said I didn’t want to be there by myself at any time I know some people who would have been there right away. People close to my heart.

So the last day I needed to get my Mri. Ryan came down late the night before. We went to the movie Trainwreck. Not a kid’s movie! Dang though it was SO FUNNY!!! I think I have a woman crush on Amy Schumer because she is so so funny. That movie cracked me up. I seriously snorted at the end of it. Yep! I laughed so hard I snorted. I admit it. It’s because my mouth is too big ha.

The weeks been long but its over now. Mri is done and today I found out I have another tumor. I do indeed have to wait for all my test results to come back but at least we have a target. I should be happy I have a target. The first time I was so excited I had a tumor. I know that sounds crazy but it was my way of verifying that I wasn’t crazy and that all these symptoms were real and came from this pesky thing. This time around I am not happy. I don’t want to have to do this all over again. Brain Surgeries aren’t my fav ha! I am going to be strong though. I am not as scared this time. It’s okay for me to have one day of breaking down, crying and being upset. Tomorrow though I will be back on my game! I have great support and that helps me a lot. I have God which helps me even moreJ I have things to look forward to this week so this is going to have to just wait.

This weekend is going to be super exciting. One…..I am going to an amazing ladies wedding! So excited for her. Even more excited that she asked me to make the cupcakes for it. This is a very cute couple that will seriously enjoy happily ever after. Secondly and my best ever thing is….MY KIDS COME BACK! They have been gone all summer at their other parent’s house. I need my teenagers. I love them and miss them so much its insane! I am going to be so excited! I can’t wait for the chatter to begin. I need to remember how to cook for 6 again and not 2 ha! They are my prides and joys my four teenagers and I can’t wait to see them.  There is always a silver lining. I just have to make sure that I keep the positive as my focus. I will too. I am going to beat this! I am not afraid! If anyone should be afraid it should be my MIL (mother in law) because when/if I have surgery she will have to watch all the kids. She should be very afraid haha! I know you are reading this…I love you!

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My Rare Disease, My Story

Novartis.com

 

Oh where do I begin? Let’s start with when I didn’t know what Cushing’s was. Let's back track to the beginning.

The day I got diagnosed was my sixth time to the doctors office for bronchitis that year; it was my second time with walking pneumonia. I went in and cried to my doctor that I was barely eating, gaining weight, I was only sleeping two hours per night, my body always hurt, I had bruising all the time and swore that I was going crazy, had depression or was a hypochondriac. He looked at me and said, “You have Cushing’s I bet.” I thought "Is this man crazy? What is Cushing’s?" He examined me as this was the first time I had seen him. He looked at my neck and said that I had a buffalo hump, saw red and white stretch marks on my stomach. He reviewed my food log and saw I was only eating 1600 calories per day and had gained eighty pounds in a year and half and was still gaining.

I had a hysterectomy three years prior and felt like I had hormone imbalances ever since. Actually, I felt like I had those even before that. I always thought  the loss of muscle, the bruising, and weight gain was all because of that. It was from the hormones but not from that. I went to doctor after  doctor after doctor and they said my estrogen and testosterone was fine. Sometimes they would give me a pill for depression or more estrogen to cure my hot flashes and other symptoms. The depression pills never worked for me. I went to a doctor that gave me more estrogen and had their clinical psychologist call me to see if I wanted “had bruising, cried a lot, was 37 and must have a bad home life.” That made me SO mad! I wasn’t having a bad home life at all. I left that clinic and went to another one because of that. It was meant to be because that’s when I found Dr. Edmonds,my primary care physician, the one that said I probably had Cushing’s.

​After Dr. Edmonds said I needed to test, he set me up for two tests: an 8 a.m. cortisol blood draw and a dexamethasone test. One came back positive but the other was negative. Then my doctor thought maybe I didn't have Cushing's. By this time, I had looked up everything I could on Cushing’s and started researching everywhere I could. I found some videos on Youtube, a couple of websites, blogs and Facebook groups on Cushing’s. I researched Cushing’s specialists and decided to go to, in my opinion, the top endocrinologist at the time, Dr. Theodore Friedman (or "Dr. F., as we call him). He listened to me. I tested A LOT! I even tested wrong at first, by testing when I felt bad instead of testing when I felt better (on a high). At first, some of my tests came back normal because I cycled from high cortisol to low. After learning more and getting help from other Cushies by figuring out when to test, my tests came back high, high and high. I went in for a MRI (you should always get a T3 MRI) and they saw something that COULD be a tumor. I was scared and relieved at the same time. What a weird feeling to have. My endo saw a tumor on the left side and my neurologist saw one on the right. It was very confusing but I was finally diagnosed in the beginning of July 2014 and had my surgery scheduled three weeks later in Houston, Texas at MD Anderson, even though I live in California.

Once I was ready for surgery, it couldn’t come fast enough. I wanted to get rid of the tumor and get back to a normal life. By the time my surgery rolled around, my muscle wasting had me only able to lift about 10 pounds. I still wasn’t sleeping. I was angry at nights and had so much anxiety that my foot was tap, tap, tapping all the time. I bruised if someone touched me hard or bumped me. I was depressed because I felt like my family would do better without me around. I am a mother of four teenagers.  It was hard because I wanted to do so much for them. I felt bad that my husband was picking up the slack. I wanted ME back! I wanted to ride my horse, shoot my bow, cook dinner and be able to move the pot of spaghetti etc. NOW I HAD THE CHANCE!

July 25th,2014, I had my surgery. I wanted to jump up on the table to have my brain tumor removed. I had a calm that day and was prepared for it. My husband was by my side and I waved at him and said “See you on the remission side.” When out of surgery, we were told that they had found TWO tumors on my pituitary that were connected underneath. They felt they had gotten it all out. I was relieved.

It's now seven months after my surgery. I am starting to  lose weight.  I am sleeping every night all night long. My hair is growing back. I am not bruising. I can think again and don’t have brain fog all the time. I feel more like ME again. Every single symptom has reversed or is getting better. I can lift 55 pounds now! That a lot considering I could only lift 10. My friends, family and especially children see the differences and all for the good. I take it day by day because recovery is hard and I have to remember I am not going to be ME all in one day. I have more and more glimpses, though, of the old me. I am happier. I am happy to see the flip side.

I have really tried to become an advocate for Cushing’s. I have started a Facebook group called “ Cushing’s!!” that has over 800 members and is all about Cushing’s support. My friend Van and I started a blog together, www.2cushiegirls.blogspot.com. My good friend Rachel and I have worked hard on a website called www.Cushingstories.com. Its a place to go to see other patients stories. Not only is it their story but we have patient videos (in their own words) and tons of Blogs. We want to let people know there are others out there and have it all on one site. The stories of all of us. It’s why I decided from the beginning to YouTube my journey because that was the first place I looked for others like me. I cried on my first video. I almost didn’t post it. I decided that if I can help one person that it was worth the humility of it all.

 

 

There is a lot of information out there. www.Cushingstories.com is a AMAZING site. Also www.Cushings-help.org. My personal favorites are these blogs because they are real....and you really can see the journey of the person!

 

Living with Cushing's Disease is one of my personal favorites. Its written by a good friend of mine who is also the Co-Founder of Cushingstories.com. She is someone who is amazing at keeping it real and positive. She has had her struggles but has been in remission now for years! Check out her blog https://cushieworld.wordpress.com/

 

Moxie has an amazing site that is chalked full of information!!! She is an amazing lady who will always be there for you to answer questions. Please check out her site at http://www.cushingsmoxie.blogspot.com/

 

Then there is my good friend Nicci who is very real, raw and doesn't hold back what she is thinking or feeling. You should check her out at http://cushiequeen.blogspot.com/

 

I hope now you know a little bit more about my disease and have an understanding of what my family and I have gone through. Each day is amazingly better! As you can see on my blog that I am living and we are having fun! Just thought I would tell you my story!

Bless all of you. Thank you for reading my story. Please feel free to write me anytime. I always answer.  Cushingscountrygirl@gmail.com.