My True Weight

Okay, I am about to talk about that ONE subject that is so hard to talk about. My struggles with losing weight.....and my successes too!

I feel like I am a pretty normal person. I mean I have good days and bad days. I like to eat yummy foods but I don't particularly overeat. Actually my husband says I don't eat enough. I think that is because he is the cookie monster and I never eat cookies ha! Damn him though because he is skinny ha!!!

Most of you who read my blog know that I had Cushings. Its a disease that makes you gain weight even if you are eating 500 calories a day and all fruits. I even tried dieting but I would get oh maybe 5 pounds loss and it would never budge from there. I was SO frustrated as I watched my body change and my weight go up on the scale. The scale was my arch enemy! Some days still is!

I gained 120 pounds. Yes you heard me. In 5 years I gained a 9th grader! I was literally carrying around a 9th grader....ok not literally but seemed like it.

I am going to do what no one probably ever does on a blog or even in secrecy with their best friend. Yep! I am going to tell you my weight. I am even going to tell you my highest weight and my goal weight.

First I will tell you that I no longer have Cushings or a tumor. After three surgery in two years (two of them being brain surgeries) I am Cushings free! So that also means that my body no longer gains the weight. Actually the excess weight that I had gained starts to come off on its own. I have never been a huge eater. Maybe when we were on the Cruise ship I ate more but that's because it was vacation. Even then I didn't get the extra ice cream or such like my family did.

I am 5'11 my husband would like to think I was 5'10'' but realistically sometimes I slouch. I am suppose to weight 190 pounds for my height and my age. Yep I am old! I am forty this year. After Cushings and before my last surgery I had gotten to 334 pounds. That is crazy!! Thankfully I have always had a supportive family who understood as I would sometimes gain 5 pounds in a day...that is no joke. My husband never said a word and loved me all the same. He was my rock. He is amazing. Most men wouldn't be that way.

Today I weight myself and yes I am still very much over weight but I am 269. I was just excited that I had gone down another tier. THAT IS 65 POUNDS IN 6 MONTHS!!!! And until 3 weeks ago that was me not changing a thing. Once I started losing pant sizes and seeing my face go down I wanted to boost it along. So now I have lost a 1st grader and still have 8 more grades to go :)

I am starting to feel so much better about myself. My goal is to be the same weight I was when I met my husband by the time we go to Cabo for Christmas. That would be so amazing to me! I know I will continue to lose weight even if I didn't diet only because I gained it in the first place because of a horrible disease.

It really does make me think that in a blink of an eye you can gain or lose weight. Its a hard thing for woman. I shouldn't be proud that I weight 269 but gosh darnit I AM!!!! I am one tall lady and the fact that I am losing weight and able to move around easier and feel sexier is amazing to me!

I guess realistically I feel strong and happy. I mean I don't know many woman who tell their true weight....especially where anyone and everyone can read it. This is a very promising thing for me. I am happy! Cant wait to see what my body has in store for me in the next couple months. Doctor said by one year my weight will be off. I am overjoyed by that.

I have one last secret though.....the other day I renewed my license and I did lie on that. I mean....I still am a woman ha!

BLA Recovery (Addisons)

5 weeks ago I had some organs ripped out of my body.  Doesn't that sound crazy? Ok, so 5 weeks ago I had a Bilateral Adrenalectomy where a surgeon (not some back alley surgeon) took out my adrenals. I went from having Cushings Disease to having Addisons. It was the best thing I ever did.

I am amazed at how tired I am. Seriously exhausted. I don't have my chipper jump around talkative self yet. Its coming but its not here yet. I feel like I always want to sleep and I always want to lay down. I did have an open surgery on one side of my body so I am recovering from that however.


I have gone from never sleeping with Cushings to sleeping 19 hours a day for the first two weeks. Five weeks later I think I sleep 12-14 hours and that is me trying to keep myself awake. I know it will subside in the next coming weeks but I am curious how long this will take.


I feel like I am pretty adverse to Cushings and all the things you learn about it through your sickness. Now its like I have a whole new ball game of having to relearn and teach myself about Addisons. I know the important things. Take my medicine at 8 and 2 everyday and NEVER skip a dose. My body does not create cortisol at all. So basically from what I have read if I don't take cortisol for two days or even one I will be in a coma. Lets hope the Zombie Apocalypse never happens because I will be dead from stress or not having medicine for the rest of my life ha! I think I have been watching Walking Dead too much lately.


Symptoms of Addisons:
Chronic Fatigue (check)
Loss of Appetite (check but its coming back finally)
Low Blood Pressure
Dizziness (check)
Darkening of Skin
Nausea (check)
Vomiting
Diarrhea
Inability to cope with Stress
Moodiness (check....my hormones are still straightening out)
Intolerance to heat or cold ( CHECK!)
Craving Salty Foods


Some of these I will have for the rest of my life. Some may dissipate and go away in time. I am learning and trying to figure out my way through this. I am hoping as time goes by I will be less tired and have more energy. I got this! With the support of my family I have this even more! Addisons you and I will be friends but its going to be a good friendship....not one where you drag me down to having crisis. Lets just be friendly!

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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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Ramblings of an insane person

Ramblings of a blogger

Have you ever just wanted to write out all the thoughts that come to mind just to see what your pattern of thinking is? As anyone who knows me personally they know that when I blog I write just how I talk in real life. I never edit or go back and read it after I am done either. I click "publish" and that's that. I do this so you as the reader get to see my authentic self.

I decided today that I am going to take 20 minutes to write whatever comes to my mind. Maybe this time I will look at it after but after I click "publish". This is going to be Rae Rae's pattern of thinking. Crazy as it may be.

I wonder how many people are actually subscribed to my blog? Why they are even interested in it. Would I be interested in it myself? I sure hope so. Wow I ask myself a lot of questions. I think in general I ask a lot of questions. That probably annoys my family but hey it's something that helps me learn and know what's going on. I bet I have found out things about my kids or husband that I never would of known otherwise. Good things...fun things...
In those talks and by prying a little deeper I have gotten to know my family more. I actually love it when people ask me questions too. To me it shows you are interested and care. That is just me though. I am not sure how I am going to get dinner done tonight. Might have to take the kids out. Weigh being at school all day then taking Josh and Cassie to get their permits then taking Jason and josh back to do 2 hours of basketball it's going to be interesting. Thankfully I have a small "me" break today to have lunch with a good friend. I am thankful because I have been so busy or out of town it makes me feel like a flake by not taking that time with my friends. I don't even care what we do but since I have been sick with cushings it's gotten to the point where I don't do the things I used to do. I don't have that extra energy. I want to and I am actually finally looking forward to my third and final surgery to be done with cushings for good. I wish I didn't even have that word in my vocabulary. Yet by having this disease I have learned so much. Actually I have made friends who I never would of met before. I have people in my life that are a great support and whom I love. Come to think of it that's how I feel about my international swapping group. I have met people from across the seas that I still talk to daily. It's interesting how the internet can make you feel not alone if you are. I am not but it's a great way of communication. I miss traveling just to see the land or seas. I feel like I have all these doctors appointments that we make into mini vacations but my dream would be to just plan and go somewhere new that didn't have an appointment or surgery involved. We make the best if it though. We mix business with pleasure. I am so thankful for a supportive husband. Life isn't always easy with four teenagers. That's four times the questions. Also four times the laughs and four times the love. My husband makes me laugh. After seven years I hear the same jokes still but he started coming up with new ones which I thought was funny in itself. He even said to me "how's that for a new one". Made me laugh so hard. I remember one time wrestling with him and I laughed so hard I thought I wasn't gonna breathe. He kept blowing raspberries on my neck. I love it when we do things like that. Makes you feel so connected. I guess that goes to something we have been talking a lot about lately. What's really important to you. Laughter and living are very important to me too. Touch. Can't forget touch. Hugs from my kids. Kisses and hugs from Ryan. Sleeping how we always sleep. Snuggle and then when wanting to sleep turning over, getting comfortable and sleeping butt to butt. Ok my stomach is grumbling. Why is it I remember to make sure the kids eat breakfast but I don't. Need to take care of myself more. I want to do a big brunch for the kids before we leave to next surgery. I like we sit down for dinner each night at the table. I think families get to busy and don't do that. I like that we do. Even if sometimes it can feel rushed. I need to double cook things and freeze it for after surgery to to help mil. To help us too. Makes me feel bad after my surgeries that everyone has to do so much and maybe that part at least can be done. I am going to take a weeks and do that. Make chili, enchiladas, lasagna, soups for after surgery. I wish they had something that you could just order homemade foods and have it delivered. Being on thousands of acres there is nothing that delivers especially all the way out to us. I love cooking when not rushed so this maybe fun. Are my twenty minutes up? I feel like my thoughts are everywhere. And boring. This is me though .....all me. Wonder how many people actually will read this? Yep there I go with my questions again.

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It took 39 years....

It took me 34 years to get the first one and 39 years to get my second one. I had never wanted a Tattoo. I always thought to myself when I was 90 would I want that on my body. The thing that turned me around on them is my Mother. If you knew my mother you would think to yourself right now "yah right!". She was VERY not into tattoos. But when she was diagnosed with Cancer somehow that changed. I think the thought that you may one day not be here changes your views on how petty something can be.


My first Tattoo was for my mother. She had decided she was going to get one. She had only a few months to live and wanted a ring on her finger tattooed for my father. It ended up because of Chemo and the other meds she was taking though she wasn't able to. So I talked to my mom for the first time in my life about getting a tattoo. For mothers day that year before she passed away I got this tattoo.

The meaning of it thought was all about her. She cried when she saw it in a good day. It was the Ovarian Cancer Symbol for her and a yellow rose in it. The yellow rose is something that goes back far in our family that has a lot of meaning. I did this for my mom. I thought about it for a long time and knew that when I was 90 I would still want it there. Reminding me. I was 34. It was the same year my mother passed away. I have never regretting what I did. I am glad I did it before she passed instead of after.


Tattoos for me are about meaning. Its about things that you want in your life that will never fade. I am not someone who would put someones name on my body, a fad of some sort on myself either.


5 years later just last week I got my second and last tattoo. After two brain surgeries and another surgery to come this month I have my motto stuck in my head at all times. Live, Laugh, Love. This is a motto that I have every where in my house to remind me what's important. My oldest son Jackson for Mothers Day one year even made me by hand in our garage this lovely piece. I have it through out my house to always remind me. I had thought about getting another tattoo. My husband and I thought about getting a couples one also but those are too trendy for me.

I tell my teens that I don't want them to get tattoo that don't have true meaning that wont fade. I mean why get sponge bob square pants on you because you like him now. When you are 90 I doubt you will still like that. Don't ever get a bf or gf name. I say don't get a name unless its say like your childrens names but even then I just stay clear of names. I had a boyfriend who got my name tattooed on his shoulder when we were 19. I remember saying to him I thought that was crazy and he better tell his future wife its his grandmothers name or something. I am not against tattoos. I mean I have two. I don't think it defines a person or makes them a bad person. Its a work of art. Its also permanent too however. Put it in a place you can hide it if need be like long sleeves or pants. I am not into hands or faces or neck tattoos. That's just me though. Its your own body. Not my decision. I do however want my kids to really think about it if they ever chose to go that route. My husband and I also want them to be out of high school. Thought and lots of time of thinking of it should go into it. Not just walk in and pick something out type of tattoo.

Anyways I feel like I just went on a rant haha. Back to the tattoo I got. My mom and I used to say that to each other the last few years she was alive. It was pretty popular then and has lost a lot of its luster. You don't see it everywhere like you use to. It has stuck with me though. Its something I really think you should do in your life. Something that I hope at 90 I am still thinking should be done with life. A reminder to myself. Its also the time in my life I am at. Its personal to me and how I feel about life. How I want to LIVE and be rid of Cushings. How I LAUGH all the time with my husband and my children. How I LOVE so truly and deeply my family. The place I chose to put it may not be the best place in the world for most but to me it was perfect. So yes...I got my second tattoo. My last one because after my last surgery I will be done with being able to really do that anymore.

I am thankful that my husband was there both time. That in itself gives me a good memory of it when I am 90 and look back on my life. Just living, Just laughing and just loving away!


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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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Bob The Bubble Boy and Rae the Cushings Girl

Cushie Rae and Bob the Bubble Boy

The Amazing Venice Freak Show introduces Bob The Bubble Boy! Come one, Come all...Check out Larry the Wolfman, the two headed snake, Morgue the Shock Artist, the Beautiful Bearded Lady and more......

Famous Venice Freak Show on AMC and Netflix

This is some of what we heard from the Venice Beach Walkway. It was my daughters 17th Birthday and she wanted to go in. 5 Dollars each and you got to see a show, meet some people and also see a Museum of interesting Oddities.

Beautiful Bearded Lady. She has Adrenal problems that create too much Testosterone

We sat down kind of uncomfortable. Not because of the seats but because not sure what we would end up seeing. The show started with Bob the Bubble Boy. He showed how his skin had "bubbles" all over his body. He told us how he started getting them at puberty and how it wasnt easy on him. I felt so much for him it was unreal. Having my Rare Disease Cushings I know in a small form how it is to be stared at or looked at differently. Next they had the shock artist Morgue and his lovely lady do some incredible things like swallowing swords, putting a hook up his nose into his mouth, sitting in an electric chair and eating fire. All things that are not tricks but they are doing for real. I was amazed and also horrified as I had to look away a couple times thinking they were going to hurt themselves. They didnt. Applause was loud!

Eating Fire

Morgue swallowing sword

Amazing Painful things Morgue can do

After the show you are able to take pictures with anyone and see the Museum. Honestly all I wanted to do was talk to Bob The Bubble Boy. I wanted to get to know HIM. He had talked during the show how people were afraid he was contagious and how they wouldnt touch what he touched. I was so saddened by how people treated him but amazed by what a positive guy he was. I had to talk to him.

My Daughter Cassie and Bob! Give him a hug from us

What I thought would be a couple minutes slowly turned into an hour where he had to excuse himself and go on stage then come back and talk to my husband, daughter and I.

Bob is Bob Heslip. He is a 50 year old man who has a very lovely wife who works their counters at the Venice Freak Show. Bob has 3 children of which one is still at home as she is 15. He is also a grandfather to two beautiful Grandchildren. Bob has NF.

Most Amazing Man who isn't afraid to show you more about Neurofibromatosis. Its not contagious! Educate yourselves

What is NF? Its Neurofibromatosis. Its a condition that ecnopasses a set of distinct genetic disorders that cause tumors to grow along various types of nerves. It causes tumors to grow on or in the body. It is hereditary and half of all people who have this have gotten it from their parents. It can be VERY painful as it is at nerve endings. IT IS NOT CONTAGIOUS! This is the same condition that the Elephant Man had. Bob thankfully is blessed to not have the pain part of NF. If you would like to learn more about NF please visit www.ninds.nih.gov


Bob is an amazing person with an amazing attitude of life. He has gone through a lot of things in his life. So much he said that he should write a book about it one day. I was saddened when he told me some of those stories as no one should be treated the way he was in some of the situations. Like being at work and a lady saying she wouldnt touch something that he had touched. Or people who are afraid to shake his hand or give Bob a hug. Bob just has this glow about him. He talked to my daughter about bullying and how she should just be happy every morning that she is alive and well. Our family loves Bob Heslip. I wanted to know about the real guy behind Bob the Bubble Boy.

We did talk a lot about the Freak Show aspect of things. Todd Ray runs the Venice Freak Show. It has been on AMC and also is now on Netflix too. We went home and watched many episodes of it and loved seeing the same people but in a different light. In Todds Ray words from the first episode he redefines the work FREAK by CELEBRATING the differences. He said it doesnt mean monster or ugly. Its Celebrating the differences that you have. Bob told us he feels comfortable with his new second family there at the Freak Show. He told us about how many of the people there have a medical condition. They fit here and are working for a living all while unbenost to you they are teaching you how others can be different in what people percieve as "normal". Each person was so kind to us. Amazing people who want you to understand them. They really can open up a lot of peoples eyes to differrent things as they see hundreds of people a day. I wish there was a way for me to tell hundreds of people about Cushings Disease everyday.

Two headed lamb

Bob really changed a lot of our thinking. At first I was almost worried about going into the Venice Freak Show. Not because of what I would see but because I didnt think it was necessarily right to be looking at someone in a certain way. However.....please do go! It will be a learning experience for you. Its fun and it helps let us all celebrate the differences in our lives. Lets us all learn that everyone has their things that they contend with whether its something that you can see or something you cant see.

Two headed live snake

Bob and I talked a lot about Cushings. The Rare Disease that I have that makes you gain weight, lose muscle, not sleep, mood swings, bruise, lose hair, gain facial hair and gives you the image of a buffalo hump. We talked about how its hard with this disease as people stare at you because they just think you eat too much. I told him how I gained 120 pounds in 2 years and how I had a buffalo hump. I am now 5 weeks in remission and things are turning around for me. We had a little bit of being able to talk about how we are different. I think that is why I wanted to talk to Bob so bad. He was this really intellegent gracious man. He talked so loveling about his wife and kids. He talked to my husband about how he could see the pain in his eyes for watching me struggle to walk and happiness to see me recovering. Ryan talked to his wife about how wonderful it is to be married to people like us. My daughter was so changed by Bob. She wants to be his daughters friend as she is 15 and my daughter is 17.

Cassie before Freak Show

Bob the Bubble Boy changed our way of thinking and lives in the couple minutes he was on stage. Please go to the Venice Freak Show. The whole crew there wants you to see them and to meet them. Let it change your life also and celebrate the differences that people have. Be shocked by the stunts they do in there and check out the museum. Its pretty neat and its only 5 dollars to get in. Make sure you shake Bobs hand and give him a hug from us.

Ryan with Morgue and Electric Girl

In the end of this all I just wanted to say something that is very close to my heart. Dont judge others! You know we all do it. I do, you do, we all do. We dont know what someone is going through in their life. We dont know what they may have been having to deal with since birth or what they might be dealing with just today. Each person is unique and should be celebrated. I know I get stares when I am eating even if its just a salad because I am bigger. I get stared at when I walk with a limp because of my muscle wasting the last couple years with Cushings Disease. Bob gets stared at for the tumors that have grown all over his skin. He gets treated unfairly because people arent knowledgable of the disease. Some wont even shake his hand or touch something he has touched. Doesnt make a person feel good. However these diseases have made us stronger too. It has made our outlooks on life better too. I agree wholeheartedly with Bob. When you wake up in the morning you should be thankful. That is a good day! Thank you Bob the Bubble Boy for letting me write about you and for forever changing our lives.

Hollywood actor and Mexican acrobat Larry Gomez was born with congenital terminal hypertrichosis, a rare condition that produces excessive hair growth

To help Bob please check out his video. This video shows him in all his glory and talks so much more indepth on NF and what he has gone through. Please SHARE it and also THUMBS up his video as it helps him make a little bit of money to go towards his medical bills. Also come visit the Venice Freak Show on Venice Beach to support the guy and gals that are there! They would appreciate it!

Bob the Bubble Boy video... Click here... https://youtu.be/VEVgp4wmxOs

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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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Imprisoned? I am breaking out!

For three weeks I have been imprisoned to my bed! Ok its not THAT dramatic. I had two surgeries on October 1, 2015. Pituitary Surgery to remove a Brain Adenoma and then sinus surgery. It was a two for one special. Since I had both surgeries the doctors told me strict bed rest for three weeks.

Its week 2 and 5 days! I cant do it anymore!!! Its funny how people will say to me that they would love to stay in bed for three weeks. It drives me totally crazy. There is only so much cooking channel (which I love) and being on Facebook that I can do without going mad insane.

So I decided today that I am going against the system and being a rebel! By being a rebel I mean sitting in other places of my home and taking a cart ride to see all my animals that I haven't even seen  (besides the dogs) since my homecoming. Don't worry all my babies have been well taken care of by my family.

I have to admit if I am going to be stuck in bed its nice that I haven't had to worry about cooking, cleaning or laundry. My MIL has been here with us helping and making delicious meals each day. I told her that she is acting like she is our maid. I hate that but she said she is bored and likes it. Makes me feel bad. Even though I appreciate it a lot! We couldn't do it as easily without her being here. Makes it so Ryan can work and the kids still are under watchful eye of all of us.

So today I am being a rebel. Tomorrow you will get great pictures of all my  fur babies! I fully know that I will tire myself and want my bed back by midday. Mil and Ryan are letting me up and about....we will see how long it lasts. I think I can at least make it till noon! Ha!

Its pretty bad that at 39 being a rebel for me is getting out of my bed. One more week and 2 days and I will be all over the place so watch out people! :)

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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

Swaps and Pituitary Surgery

What do you do when you have 7 days till Pituitary Brain Surgery? Well you do a SWAP of course!

Some of the items I sent to UK

In one week I will be going to Houston Texas to MD Anderson to have my surgery. I had this same surgery 14 months ago also. I have Cushing's which is a Rare Disease. Cushing's makes you gain weight, have a buffalo hump, moon face, striae, insomnia, mood swings, muscle loss, bruising etc. Sounds fun right? NOT! I have a pituitary tumor that creates too much Cortisol in my body. I had two tumors over a year ago. Had Surgery and went into remission for 10 months roughly before I ended up with another tumor. I am going to fly from California to Texas (halfway across the USA) because is an amazing hospital and the Surgeon does these surgeries all the time.

Pictures of my last Pituitary Surgery

I have had a headache now for 10 days straight. Last night was the worst but its starting to go down a bit finally. Some people might get depressed waiting for the surgery to cause them remission again. I have decided to have a little bit of fun instead. Let me tell you about it.

A Cushie friend of mine Carly and I have been talking a lot during the night when I cant sleep. She is going through the same things that I am. She told me about this International Swap Group and how fun it was. I told her I would love to join. The jest of it is you swap things from your country to their country. Things they are looking for or are interested in. The first swap is 50 dollars (USA) and then mailing the package. You get one swap partner. Send out the package and they send you one from their country as well.

Lesley chose me. She is from the UK. We started talking, took this detailed quiz of our likes and dislikes and asked each other what would be fun to swap. We both went to our local grocery stores and took pictures of things and sent them to each other to see what would look good to us. Along the way we talk and learn about each other. I have found out that she is an avid lover of animals like I am. We actually have a lot in common and talk a lot. We even send each other sneak peaks of what is in the boxes. Its interesting to see what someone would want from the USA. Bath and Body works is something that is really wanted. Along with MAC and Ulta or Sephora make up. You chose a day you are going to send and then both send at same time. Once that swap is complete and both people have their boxes then you can chose to swap with someone else.

Some of the goodies I am getting I am so excited!

I like the fact that they have a detailed quiz and lot of rules to the group. This helps with getting things you like and not things you dislike. For instance I cannot stand the smell or taste of watermelon. It would be disappointing to get things that are all watermelon. I like that I can get postcards for my kids and also learn about the country through that person. Its so fun!

It is good timing too. When I get back from surgery I will have a box to open. How great will that be! I will be in bed for quite some time so the snacks will be helpful and just the fun of having mail. I really love to get old fashioned mail. Makes me feel really special.

I am actually doing another swap with a friend that's off the group just to have a little more fun. I think my favorite part of it is trying to surprise them with goodies. I love shopping for others! Its so fun! Since we live in a rural place though I think my post office had a learning lesson on how to ship fast to another country lol.

This is my new hobby that I am going to just love. I think its great for my family to try new things also from different countries. I cant wait to swap with France or Australia. Pineapple lumps look really good and I want to try some :)

If you have the money or the time to do a swap I would totally suggest it. Its good clean fun and you get to meet some fantastic people! Hey....If you ever want to do a swap with me...I would love that too!

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Dancing with the Stars Perfect 10

I would have to say that this weekend as great! My MIL as I call her (Mother in Law) and I went to Dancing with the Stars Perfect 10. I love dancing with the stars but my MIL loves it even more. Ryan had asked me what I wanted to do for Mothers Day and I told him that I wanted to go to this show with my MIL. So that was our present plus a bonus dinner before the show in Redding Ca.

Sally, my MIL, got us a hotel so we didn't even have to come back that night which was fun. Ryan got stuck taking care of all the animals but I think he was secretly happy to have a day or two of quiet where he could go hiking etc.

I am grateful that I like my MIL. I actually get along with her really well. She is great company to have. We got in the car and off we went! We were all smiles as you can see.

We decided to go to the pool at the hotel before the dinner and show. First we had to eat because well....we were out! When you live far away from restaurants you use every excuse known to man to eat out!! We went to Red Lobster and had a great lunch. MMM....I hadn't been to Red Lobster in years actually. Hey lunch time specials there are not bad at all! Anyways back to the pool. We went to the pool and Jacuzzi and laid out some. Just know this this ghost white skin I have did not even like that I did that haha! Its pretty bad when you MIL looks better in a swimsuit than you do!! Sexy little thing she is! We had fun relaxing then went back to get ready for the show and dinner.

Dinner was great. Dessert was AMAZING though! We sat a table with two other couples and it was entertaining to say the least. Once people find out you live in a rural place I swear they look at you like you are from Mars or something. I have to laugh but MIL and I both like to people watch. We were saying whose outfits we like and noticed that there were A LOT of elderly woman there waiting to swoon over Val the main male dancer. I think I found some styles I definitely want to try and some I definitely don't ha!

Once we got the show we had to have Tshirts and Coffee Mugs . Yes I am one of those who has to have a coffee mug from everywhere I go! You should of heard the bickering (in fun) between MIL and I on who was going to pay! I WON!!! FINALLY!! Its not easy let me tell ya! (see that MIL!!!). We finally got to our seats which were not exactly where I thought they would be but was fun anyways. We had gotten tickets after it was already almost sold out. We could still see the stage, faces, abs (that's important) etc. The place was packed!

The show was awesome! They are just magical at dancing. I don't even think I could get my feet to move that fast if I was being hunted by a serial killer. They were so cool. I was excited because Rumar Willis was there since she had won this season with Val. She had a boot on her foot so couldn't dance but she sang many of the songs. I was really impressed by her sultry voice! She kind of sounds like the girl who sings at all the beginning of 007 movies. Amazing. The show was funny, sexy, fun, exciting and all that I was hoping it would be. We had a great time!

I am glad that we went. We also found out that the Moscow Ballet is doing the Nutcracker in November. I am buying tickets now! I am even more excited about that one! Side note. My parents used to take me to the Nutcracker in Germany each year and it was amazing. I want my family to experience that too.

The next day I think we were still excited from all the dancing. MIL got us a hotel room to stay at and when we woke up we came up with the brilliant idea of having popcorn for breakfast. To the movies we went! Decided on seeing Magic Mike XXL. I lost on paying! She got me back the whole rest of the day! UGH! I have already seen Magic Mike XXL with hubby because I love Channing Tatum and he is an amazing dancer. Lets just say this one was WAY better than the first. MIL had a smile on her face so I know she loved it too. We both agree we didn't really like the first one.

So popcorn for breakfast we had to have something just a TAD more substantial for lunch so MIL took us to Logan's Steakhouse. I crack up at this picture of her with a whole rack of ribs! Look at this tiny little MIL with all that food. Even the waiter looked at her weird. She said "I would like a whole rack of ribs".....pause...pause....pause..."oh and a box because 3/4 of this is going to my son". I think the waiter was relieved. The ribs look bigger than her!

It was a fun day. We did some food shopping and headed home. I love spending time with my MIL because she is funny and smart. We talk like friends. Not like I am married to her son. This is pretty nice considering how ppl usually talk about their MILs. It was a great weekend. I needed it. Thank you to my dear hubby who got us the tickets and thank you to my MIL who is stubborn as hell and wouldn't let me pay for much! I love you both!

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