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

How this blog came to be....

I thought it would be good to tell you how Van and I got together to do this blog and why it is so important to us:) This is my side of the story:) 

 I got an email from Novartis Pharmaceutical Corporation asking me to come to a conference in New Jersey. This meeting would be called Cushings Disease Online Influence Advisory Board meeting. I had to really think and pray about going to this as I was only 2 months post op when I received the email. After many phone conversations with Nicole Riley the Director of Public Relations I decided this was the experience I needed. I want to help other Cushies like myself and if I could help a company that has the means to help the masses.....I wanted to help them. 


2 weeks later I was on a plane from California to New Jersey with my best friend (cant really travel alone yet as I cant pick up my luggage lol and am only 2 months post op).

I left my husband to tend to our Four ...yes four teenagers. He was all for me going to find out information and to tell my story. Do you feel bad for him? hehe....P.s he did great as usual!

The first night there we were to have a dinner to get to know the other Cushies that were there and meet the staff of the Novartis group. I swear I was the last person to show up at the dinner and as I sat down..............there she was! :) It was Van!! I recognized her right away because when I first diagnosed I went crazy on You tube looking at before and afters and she was the first video I ever watched. She was like my lil rock star. I leaned over to my BFF and said..."I am going to tell her what she means to me". Later during dinner I had my chance. I spoke up (a lot because I am a talker) and told her how she influenced me so much and how I was so happy to meet her. From that moment on I knew we would be friends. **** I swear I am not a stalker hahaha****

The next day was the conference. We learned a lot. We learned about how to get our stories out there more and the facets that we could do. 7 Cushies and Novartis staff talked about how to get the general public to know more about this rare disease. We talked a little about our journeys. We talked about the drug Signifor that we learned was for those who couldnt have surgery or wanted to lower their cortisol until they could have surgery. It was nice to know their were more than one option. Especially for me because my tumors were so close to the carotid arteries the Dr's weren't sure we would be able to do the surgery. Most of all though we talked about being advocates, getting information out there. The right information. the other Cushies were amazing and I was so thrilled to meet them! Rachel Wilson and Mary O were some of the Cushies we met that are instrumental in Advocating Cushings as well!

Novartis Team and Cushings Patients 2014

Later that day Van and I were able to talk. We talked about how our symptoms were different, how our diagnosis went and how we are doing on remission. We talked about trials and tribulations. We talked about weening from cortisol after surgery. We talked about a lot. But mostly we talked about how we want to help others and how even if we just reach one person and are able to get them to diagnosis then we would be excited.

The conference ended. Novartis did an amazing job. Really helped us in knowing how to reach the public. Van was found through her other blog and I was found through my Youtube videos. We knew though that we could do more. I called Van when I got back to California. I am sure she thought I was crazy lol. Told her I thought it would be great to have a blog with the two of us because we have such different symptoms and journeys. I was afraid she would say no because I had never done a blog before. I told her to think about it and get back to me. It didnt take long! She is amazing and so sweet! The first text I got back was an idea on the name of the blog. Thats when 2cushiegirls began! All from a meeting of two ppl at a Cushings event. I cannot express how glad I am that I decided to go!

2cushiegirls

 Now you can find us through blogs (this one and Vans http://onedelicateheart.blogspot.com 
and my Facebook group cushingscountrygirl@groups.facebook.com. Dont forget we also have Youtube pages...Rae Collins and Onedelicateheart. Now we have also put ourselves out there on Pinterest, Instagram and Twitter. Thank you to the Novartis Group for really helping us to want to help others using our own Journeys!! If you are a Cushie....we would love to hear your story also. Its all about getting our journeys knows and all about information so maybe we all can help just one person! 

Disclaimer: Novartis paid for our trip, meals and lodging while at the Conference.

#raredisease, #cushings, #novartis, #signafor, #2cushiegirls, #symptoms