NEW CUSHINGS WEBSITE

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

Pituitary Surgery for my friend, and remembering mine.

My good friend Heather is going into her pituitary surgery tomorrow morning. I have all this excitement for her because I know what can happen, the changes that can happen for the better, once the tumor is out. I had pituitary surgery 3 months ago with the same Neurosurgeon at the same hospital. I am so proud of her and how far she has come and how hard she fought listening to her body. Thinking back about the surgery it really does amaze me how they go up the nose to get a brain tumor out. Although I am sure she is scared of pain or of complications or whatever thoughts may run through her head....I try to keep it positive because it IS! This surgery changed my life. It made me go into remission. Did the first couple days suck because of nose packing's? Well yes....BUT it wasn't nearly as bad as I thought and was so manageable with a little pain medication.

hour before surgery

My life changed that day and I am hoping for my friend her life changes tomorrow for the better. We both know some ppl who have had more than one surgery BUT we know SO many more than have only had one. Either way, whatever happen, I am going to be there for my friend. We met through a Cushings website. Its interesting how you connect to someone you haven't met in real life. We talk about it all....even our kids, normal lives, daily frustrations or joys. This disease may be debilitating and suck (sorry but it can) but its amazing the blessings that come with it too. So many blessings like finding good friends!! 

Tomorrow she wont be feeling the best but I have shown her my picture collage which I hope helps her and others. Because you see how fast you go through it. Heck I am 3 months post op and no one in my town can tell I ever had brain surgery. This can be a good and bad thing. Good we don't have the scars and shaven heads but bad because well you don't LOOK like you had it so ppl don't know. It is BRAIN SURGERY so you do have to take it easy for a long time. Recovery is key

After surgery

Nose packing, its out day 2-3 though

After just a couple days her nose packing will be out and it will be a breath of fresh air. It will be such a relief. Hopefully by this time she has crashed. Not crashing like not breathing and heart stopping (nurses say this is crashing). BUT Cushings Crashing! Which is when your cortisol levels plummet. It will make her feel like crap, but this is a crap we want her to feel like........................it means remission.........! I was lucky enough to crash on my first surgery. I felt like crap but let me tell you it was the best feeling in the world because I knew what it meant. Tomorrow I am sending her flowers. And as my BFF did to me the card will write "I hope you feel like crap. xoxo". 

packing out!!!

great support from hubby

 I pray for her that her surgery goes well. I pray she finally sleeps. I pray she feels like crap because her cortisol crashes. I pray that she is not scared but hopeful. I pray that she feels a difference in her symptoms as soon as a week even. I pray her brain fog leaves. I pray her family lets her rest and that her support system understands its going to take months to recover if not a year. I pray its speedy for her. I pray she goes in tomorrow morning calm because this is something she wants. I pray most for remission that never leads to another tumor. I pray....I pray....I pray for all those things that I wanted for myself and for all the things I want for all the cushies I know. And if this doesn't happen (which i think it will) I pray she knows that we are all here for her. That its okay and we will be there everyday after that to get her back in for another surgery. I feel in my bones though that she will go into remission.

two weeks later

less than a month out from surgery

Remission is still a long journey but its the uphill side of things! Its that light at the end of the tunnel. We aren't all better just because the tumor is out. Slowly though we will get better, start to see the glimpses of our old selves. Its a magical moment when those things happen, when we see the difference. And remember Heather that when you are in remission that you will still doubt and worry because you never want to go back BUT as I had to learn...........YOU ARE IN REMISSION TILL YOUR NOT!!!!  Go get em girl!!!

Yes I am a Cushie Mom

 

Christmas 2012

I am a mom of four teenagers and I am a Cushings Mom. I don't know which one is more exciting to read about so I will write about both :) I have a blended family which makes it so our teenagers are very close in age.We have been a family for almost 7 years now and I am very blessed that they get along so well!! Jackson is my oldest, 9 months later is Cassie, 18 months later is Joshua and then only 2 months later is Jason. They are my world! I joke with ppl in our community however  that next year I am moving to India so my husband will be left home with a 9,10,11, and 12 grader:) With being in a very small community you become very active in their school lives. Just today I have a football game to go to for two of them, a bake sale for one of them and a dinner to serve for another one of them. Its a busy busy life.

Josh & Jackson playing football

200 cupcakes made for a game

I have always been a very busy person who wanted to volunteer and help in anyway I could at the kids schools or for their sports or clubs. But the year before I had my surgery was VERY tough. It was hard to do any of that and I started to stay in more and more. I never knew when I would be sick. I started to feel like someone who would sign up for something to help and then feel like a flake because that day I would feel horrible. I never knew when I would sleep or not sleep. I started to feel as if I was losing myself. The sad part was my kids started to notice too. I would still do their bake sale but I would go get pre made things. I would still attend their games but I was gone right after it was over and in so much pain from sitting. I did it because I loved them. I pushed myself to do it. I would go to a game though whether it was football, volleyball, basketball or baseball for them and it would take me days to recover from that. I was sore. I couldn't sleep. I had a hard time getting in and out of our truck. I felt like I was failing as a mother. I would cry at night to my husband how I had lost myself and how they are going to grow up just seeing someone who was sick. They were helping me out more than I was helping them I felt. It was hard.....really hard! I am not going to lie....I cried a lot about how I wanted to be a better mom, a stronger mom for them. Thats when my husband had to step in a lot and help me. He had to become my superman....

He had to work and sometimes come home and cook meals, drive the kids to school functions or just help with chores at our ranch. I went from cooking from scratch to doing more premade stuff. And guess what! That was okay. My kids still loved it, they still grew and they still had good meals. I had to learn that doing things in a simple way was ok to do! It was! I didnt have to be perfect!I just had to be there for my kids. Talk to them, love on them, be with them. We did more movie nights at home together with fresh popcorn and we did more game nights.  I was blessed they were teenagers and could comprehend more of what was going on. It had its positive points and its negatives. I think it scared them more because they are at the age where they could go and research on their own or worry because they heard the word "tumor". A hard moment in my life was when my daughter gave me a bday painting (4 months before my surgery) and on the back she wrote this....

 It says..."Dear Mother, I created this painting because of your influences. You are Gods child just like many people. this was made because you will always be protected and of course you will be painting in watercolors. I hope that every time you see this, you will be safe, happy, healthy, and just in a good mood! This paper is being watched over by many angels, one of them is your own beautiful mother. I HOPE that by the third time you read this to yourself, you will be cured of cushings. That disease is crucial to leave because you cant do many things because of it. i hope that you will live the life that you have always wanted and that it goes in your direction. And guess what? In the middle of this ninja our dog just threw up. Hope my day gets better as well! (this part cracked me up folks!). So I hope, want, you will become a beautiful person that you have always wanted to be. Okay, even though you already are beautiful inside and out! love Cassandra. always praying".  Now tell me that wouldn't make you cry! 

My kids are all crazy and like to have fun like me! I am now 2.5 months post op and am getting my life back slowly! I love to cook and bake and am back to doing that daily. Even started canning! I went from only being able to lift 10 pounds to lifting 30plus now. I am losing weight, I am in a MUCH better place attitude wise and WANT to be around ppl again! I had hope! I had to fight to get here but I did it! It was worth it to me! I am enjoying my kids more and more. Not that I ever really stopped, I just was in a different place. Even my kids notice the changes and Cassie knows her prayers were answered.Here are some fun pictures of us in the last couple weeks....Things can change! I am living proof! We just need to have a good support system out there and if you dont have one at home....you can find them online! There are great Cushings groups on Facebook....I even started one myself called "Cushings!!" And there are great sites like Cushings-help.com where you can find tons of resources. If you ever need someone to talk to even please feel free to email me at Cushingscountrygirl@gmail.com and I will always respond!

Jason and I

My daughter Cassie

Jackson going hunting

Joshua and I

cushings surgery pituitary

Van's Introduction to Cushing's

Hi guys my name is Van. I am 25 years old living in Houston TX. I got a degree in Fashion Merchandising during the time I was sick with Cushing's Syndrome but now I want to study creative writing. I live with my loving boyfriend (Muffin) and my two adorable pups Vankey and Rascal. I enjoy eating good food, I am a shopaholic, fashionista, and love to travel. I have my own blog called http://onedelicateheart.blogspot.com that blogs about my journey and to raise awareness.

Muffin and I High school sweethearts

Rascal and Vankey

I had cushing's for about 5 years before getting a true diagnosis. Most doctors ignored me because I did not look sick enough or Cushinoid enough due to the fact that I did not have a huge weight gain (though 25lbs is still a whole lot for my frame). Last year my period stopped for a full year and I had extreme cystic acne all over my face and neck. I still had the moonface, insomnia, fatigue, hirsutism, hairloss on the head.. The whole deal. My depression and anxiety became so severe that I wanted to end my life many times. People could not understand what I was going through and doctors ignored me. Finally I had a moment of realization googling my symptoms and WEBMD said Cushing's Syndrome was possible. My boyfriend and I laughed it off because it said "rare disease" so we took WebMD lightly. Still, I felt that I needed to checkout my hormones so I went to see a endocrinologist. After many tests, labs, scans... Last year I was diagnosed with an adrenal tumor. To my horror the doctor said I was pre diabetic and needed to take action immediately. I had surgery (adrenalectomy) which removed my whole right adrenal gland that had the tumor in May 2013. It has been a year and I am still in Recovery which means that I am waiting for my remaining adrenal gland to start producing vital hormones. I take hormone replacement called steroids for the imbalance.

By looking at me I seem to look pretty normal, but I still suffer greatly everyday now that I have Adrenal Insufficiency. I am tired, depressed, and lack appetite. My periods came back and now it is gone again. My symptoms have improved but thing's are not how they use to be. My quality of life has changed greatly. You can read more of it on my blog. It is just part of the rollercoaster we Cushies have to deal with in our journey. Though everybody's journey is different and unique. 

Cushing's has taught me so much and I hope to pay forward what I have learned to the public. Keep reading and we will go into depth in our next few posts. Our main goal is educate people on how complex Cushing's can be. Also that one day the world will understand what this mystery Cushing's is all about and people can be treated and cured before it takes away too much of their life.

When I met Rae, we immediately were on the same wavelength. Mostly by the fact that she already recognized me by my videos on youtube and she is such a genuine and sweet person. The interesting thing is how we both suffer from Cushing's however we have opposite symptoms.. as you can see in our "during" photos we look quite different with our appearance and symptoms. We will make a chart and compare our different symptoms. It just proves to show that you cannot judge a cushing's patient by their appearance. I hope that this blog will be useful for other cushies like me or Rae. We will continue to advocate for Cushing's and will be 2cushies for life. :)


Here are my videos please watch fully on youtube to see the captions and comments. Please like and share if you think you may have cushing's or share to someone you know. Thanks for reading! Let's get this started Rae!!

 

Cushing's Video Part 1

 

Cushing's Video Part 2 (recovery)

 

                                          My acne Video

Rae's Intro to Cushings.....

Hi! First off I would like to say thank you for even reading this! I hope in some way the posts that we do will help you in some way. I wanted to introduce myself.......

My name is Rae Collins. I am 38 year old married Cushings lady with four teenagers. Yep, you heard me right...4!!! I have three boys and a lovely girl. My life is very busy just with being a mom and a wife. I live out in the middle of no where. Adin, Ca where their is only 250 ppl and live on a ranch with miles upon miles of acreage. I am however a world traveler and love to see and experience new things as my father was in the military so I was able to visit 22 countries growing up. I have the best of both worlds.  Cushingscountrygirl@gmail.com is me......

I have had Cushings for well over 4 years now. I had tons of symptoms....weight gain, brain fog, couldnt sleep, high blood pressure, straie, hair on my chin and face, losing the hair on my head, muscle loss, bruising, thin skin, pain, anxiety, depression, mood swings among other things. But these didn't happen all at once. I did not end up getting osteoporosis or diabetes.

After my kids

185 pounds and 6 feet tall

When I first started getting symptoms

Not everyone has all the symptoms....which is one of the reasons that my co-blogger and I decided to do this blog. To show two sides of the story (journey). We are so different yet we have the same struggles.....

2 months post op with my co blogger! She is amazing!!

My amazing husband and I ...2013 260 pounds

Right before surgery in July 2014 top weight 320

Fast forward to now....I am 2.5 months post op from a pituitary surgery which took out two tumors that were close to my carotid  artery. I am now in remission and slowly daily I am recovering. Its a slow process but its on the uphill side so I am very happy. Changes have already happened in 2 months. I have lost 20 pounds, I have way less brain fog. I am now able to lift almost 30 pounds at once when before surgery at most it was 10 and it hurt my arms to brush my teeth or hair. I have a better mood and anxiety is gone! Gone I say! and YES I AM SLEEPING!!!

This blog for me is to tell you about my Journey and to have a place to say my thoughts and feelings. I want Cushings to be more known. Advocate for it! There can be a light at the end of the tunnel! We can live with Cushings in some way. It may not be easy and I know its very debilitating but to have hope is what I wanted.....and hope....is what I want to give!!! #cushings #cushingsdisease #raredisease #2cushiegirls #post-op #journey #Pituitary #Adrenals #surgery #recovery

 

My first video just found out about cushings

 

Me post op 9 weeks