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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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.

Cushingstories.com Thunderclap Campaign

https://www.thunderclap.it/projects/21819-misunderstood-and-misdiagnosed/embed

Please go support this campaign by Cushingstories.com to increase Cushing's awareness.  Once we get 100 supporters (by February 22, 2015), our campaign will be forwarded to celebrity Thunderclappers to pick causes they care about and tweet to their followers. Its free and easy as just clicking a button. I can see who has followed it so please let me see your smiling face!

Thanks for your help!

 

NEW WEBSITE IS UP AND RUNNING

I would like to tell you all about the new Cushing's Website. It was made by a good friend of mine Rachel Wilson and I. When I first found out about Cushing's I didn't know where to look for Videos, Blogs and Stories of others. This website has it all!!!! It just got launched today after 4 months of working on it! Please share with others......you never know who it will help out!

www.cushingstories.com

Thank you to all of you who submitted stories, videos or your blogs to help others. Without you we couldn't of done this!

Love, Rae