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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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!


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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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Why was I MIA for a month?

Long story short....I was kidnapped and taken to an exotic place to have an amazing time. Ok Wake up RAE! That is not what happened! As you all know I have Cushings Disease. Its a tumor that secrets this crazy amount of Cortisol in my body. I have gained obscene amount of weight, lost muscle, have extremely high blood pressure, pre diabetic, and the list goes on. All because of this crazy 4mm tumor on my pituitary.

Lets make this story short okay or your eyes might roll into the back of your head like mine practically did. I was headed to Texas from California for my Brain Surgery. 3 hours before we were leaving to go to the airport I get a call from the hospital and said my insurance (which they had for a month) would not pay for out of state. NOW you tell me???

Sobbing, crying, sniffing, and then picking myself up off the floor I started to make another plan.

Long story short.... Looking at tons of Neurosurgeons we find Dr. Kelly in Santa Monica who is the head of all Neurosurgery there and had TOP RATINGS! So I contact him. God was in my corner as usual and he said he would see me. He has a waiting list but he would see me. He would have to make his endo see me, he would have to see me etc to diagnose me himself with Cushings.

Again long story short. MIL watched the teens and we headed out to Santa Monica only expecting to be gone 1 week for testing, and seeing all the doctors, new MRI, cat scans etc. While we were there though he scheduled surgery (YAH!) It was still a couple days away but not really enough time to drive 13 hours back and then come back again. So MIL said to stay. Between my dad and stepmom, MIL and my husband I everything got taken care of so I could have my surgery.

October 1st I had surgery. Oct 2nd my cortisol plummeted. I was in remission! That tumor was gone! I had the best team of doctors anyone could even ask for! I cannot even express how thorough and amazing that team was!!! I do not have high blood pressure anymore, not diabetic, lost 15 pounds in one week, and slowly will gain muscle back. I am sure I am missing a lot of important details but I just wanted to get all of you back on track to where I am at now.

Did help that we had gotten a vacation rental to stay in while recovering and while we were doing all the testing in Venice Ca. Nice to be able to hear the ocean and we got a mini vacation before hand which will be another blog. :)

I am in remission! I am so thankful! I will be resting and getting better day by day! 3 weeks in bed to start with and I am only on week two. I finally put make up on because its my husbands bday. ha! So that is where I have been. Tried to make it short and sweet and to the point. I am going to write a blog when I am feeling better that's more detailed as I am not really suppose to be up yet but I snuck downstairs while everyone was sleeping this morning. Better get back to bed before the MIL comes after me :) PS she saved our lives watching four teenagers for 3 weeks!

(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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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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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!

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.