Day 6.....5 things every Person living with rare disease underatands

I wanted to share this article with you. Rachel and I were interviewed and this article came out. We weren't paid in any way just wanting to help advocate for cushings. This is 5 things every person living with a rare disease understands.

http://www.novartispharmaceuticals.com/en/stories/detail/5-things-every-person-living-with-a-rare-disease-understands

Getting Diagnosed....My Tips

As some of you know getting Diagnosed with Cushing's isn't always the easiest thing. A lot of people struggle with that because Doctors dismiss the symptoms of try and treat them individually. I went to numerous Doctors for years thinking I had hormone problems from my hysterectomy  at a young age of 34. I was treated for weight, treated for anxiety, treated for high blood pressure, treated for hot flashed, treated for bruising etc etc etc. It wasn't until I found a Doctor that told me I think you have Cushing's that I started the road to get treated for them all and not individually. These are my personal tips. I am not a Doctor but this is what I have learned a long the way. If you are reading this you already know or think you have Cushing's so I hope this helps you.

Tips:

• Doctors listen to the first few symptoms first. I personally tell people to start out with the Cushing's Symptoms that you have that are more Cushingoid. For instance if you have weight gain, buffalo hump, moon face, straie, bruising, depressed, and anxiety. You should tell the Doctor first about your buffalo hump, moon face, straie, bruising and leave weight gain and depression to the end. I know most of us say weight gain first or depression but those really should be at the end so the Doctors don't try and treat you for that and don't listen to the rest.
• Bring Before and After pictures to your doctor. Also a food log so you don't get the well you must be eating too much bit. Its helpful for others to see the difference. They don't know what you looked like before. You don't have to be big to have Cushing's either. My good friend Van who has a blog at www.onedelicateheart.blogspot.com isn't a big person at all. She is one of the founders of this blog also. Van is in remission from Cushing's. You can have different symptoms.
• You don't have to have all the symptoms to have Cushing's. I would doubt myself a lot actually because it seemed weird that I would have this disease. One thing my husband said to me was "Name something else that would have all these symptoms and come back to me". I couldn't. Maybe its a good thing to ask your doctor too. Mind you I am in remission now and had two tumors removed. I went through my doubts too though.
• Join groups like Cushings!! on Facebook or search out blogs or sites of others who have experienced this. Learn from them and others. Get the support you need because it is out there.
• If you are struggling with money for medical bills or going to the right doctor contact NORD. National Organization of Rare Diseases. They are an amazing organization who helps so many. They will help pay for your doctor bills, your hotel or flights, MRI etc. until you get Diagnosed. www.http://rarediseases.org/
• There are a lot of websites out there. One of my favorites is www.cushings-help.org which has been around for almost 14 years. It has so much knowledge. My other favorite site is www.cushingstories.com because it has personal stories of those with Cushing's at all different stages. They also have blogs to follow and Videos of Cushies. If you look at some of the stories at the end of that page is also more Videos of that particular person.
• Test....Test....Test.... keep testing. One or two tests that are normal doesn't mean you don't have Cushing's. Have your doctor give you 24 hour urine tests, Saliva's, Midnight Serums of Cortisol, Dex test, Atch tests. Remember most Cushing's patients are up at night and tired in the morning. Our Cortisol is higher at night than a normal person and can be low in the morning hence the Midnight Serums. Test, Test, Test. Don't give up! I had over half normal and half highs because I was cyclical. Check out www.cushingstories.com Facts section on when to test. It could make all the difference.
• A lot of Doctors hear that they will never meet someone who has Cushings that it is too Rare. If you feel you have it please keep seeing Doctors until they test you and do MRI or Scans. Cushing's only gets worse with time. Be your own advocate. There ARE Cushing Specialist Doctors out there. Who will listen to you. If you think you cant afford to go there (NORD can help) just remember that it is worth it to getting to the other side of this. Personally I had to say to myself its worth it to go to a specialist than waste my time and energy and money on endo after endo. Two endos wouldn't even see me because I had a normal test. I went to a Cushing specialist and found my tumor, got diagnosed, had surgery and now am in remission getting better by the day. That was worth it to me!

These are just a few tips from me. There are many more out there but these ones are the ones that were important to me. I hope that it helps. If you ever want to talk to me please feel free to comment or write me personally at Cushingscountrygirl@gmail.com

Cushings Mom of 4 Teens

 

Christmas 2014

I am a mom of four teenagers and I am a Cushing's 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. That's 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 didn't 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 Cushing's. 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 8 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 55 plus 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 don't have one at home....you can find them online! There are great Cushing's 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 and of course www.cushingstories.com . If you ever need someone to talk to even please feel free to email me at Cushingscountrygirl@gmail.com and I will always respond! You can also follow my family blog on how I am now with our life as a mom with 4 teens recovering from Cushings at www.everydayraerae.blogspot.com

Jason and I

My daughter Cassie

Jackson going hunting

Joshua and I

Cushing's Exposing Myself in Pics

Cushings.....the ugly disease:( Okay first off I would like to say I have heard this so many times and I have to disagree! This is not the ugly disease. Actually would make me mad or sad when I heard this. This is a hard enough disease of which so many ppl have a hard time getting diagnosed. I am going to really expose myself in this blog with pictures that I am not proud of and never thought I would put out there for anyone or everyone to see. BUT I am going to because I want to show some of the signs and symptoms of what could happen and what did happen to me. First off I would like to say "I AM NOT UGLY....and none of what is happening to me or has happened to my body is because I wanted it."

hot spots that just appeared

My buffalo hump that grew

round moon face

bad stretch marks just appeared from thin skin and discolored skin

bruising for no reason

belly large and bloated day of surgery

one month after surgery...going down but so many stretch marks

I would show more pictures of some of the changes that happened to my body in the last couple years from cushings. But now in remission and 3 months post op you can start to see the changes for the better. The reason I decided to show the world these pictures is I am hoping someone can relate and go in and see their doctor. I am now 3 months post op and already on the mend. In remission for the time being and things are getting better again. My body is going back to normal. Will all the stretch marks ever go away ? Probably not. But it will be my badge of courage that will remind me how I fought to get to where I am now. Each day I am getting better. Each day I will continue to retrain my mind to tell myself again how beautiful I am. That the disease is not going to define me or who I am. I am not just beautiful on the inside but the outside too. I will show off who I am and not hide from the world. Its not something everyone can do but I plan on working on it daily.......

You are all beautiful! This disease is not going to define who you are as a person. No matter what remember that I am here for you too. I understand even if its just a little. God does not make trash. I had to tell myself that a lot. He just doesnt! We are of his image...and God is not trash:) He is wonderful, beautiful just like you! This is me slowly getting back to what I looked like before.....but what I have gone through has made me stronger.....wanting to help others so they don't have to suffer as much.

my youngest son and I at onset of cushings

Year before cushings and before I cut off my hair

i will get back to this. Cushings took it from me but I will get it back

After my kids were all born

It took time to get diagnosed and it will take time to heal. I have to give myself that time. Here I am 3 months post op......

If you ever want to talk please feel free to email me at Cushingscountrygirl@gmail.com or come visit our Facebook Group called "cushings!!" I will always respond to you! Hope this was somewhat helpful even if to show you that you are not alone. There is also two wonderful sites that you should visit. One is www.Cushingstories.com and the other is www.Cushings-help.org

Cushings Symptoms

Today maybe April Fools Day but Cushing's is no joke! I entered the 30 day Challenge to Blog for the Month of April everyday about Cushing's to help educate and help advocate for Cushing's. Its about Awareness. I had never even heard of Cushing's till I was Diagnosed even though I had gone to many doctors before. If I were to have known about it I am sure I would of been diagnosed earlier and saved a lot of symptoms and heart ache. This is my hope for others. That they get diagnosed at the Earlier stages rather than suffering and having to fight for a diagnoses.

I want to talk about the Symptoms of Cushing's because that is where it starts of course. To have Cushing's you don't have to have all of these Symptoms either. For instance I was Diagnosed, had my tumor removed, and now am in Remission but I only had 18 out of 22 of these symptoms.  That was by Surgery Date when things had gotten worse.

Symptoms of Cushing's:

• High Blood Pressure
• Diabetes
• Round Face
• Fat pad behind neck (Buffalo Hump)
• Thin arms and legs compared to Stomach
• Acne
• Fatigue
• Weight Gain especially upper body
• Depression and Anxiety
• Osteoporosis
• Insomnia
• Irregular Periods
• Low or No Sex Drive
• Thin Skin
• Slow Healing
• Low Immune System
• Pink or Purple Stretch Marks
• Easy Bruising
• Mood Changes
• Hypertension
• Hirsutism
• Thinning of Hair

If you think you have Cushing's or are in the process of being diagnosed remember there are a lot of places to go to get educated on it, see others stories or be with others for support. I will tell you some of my favorite sites. We want to support you! Tomorrow I will write the different ways you can have Cushing's. If you ever need anything please feel free to email me at Cushingscountrygirl@gmail.com and I will respond as soon as possible. I always respond though! Here are some of those sites.

www.cushings-help.org which has a variety of help and has been around for over a decade.
www.cushingstories.com which has stories, blogs and videos of Cushing's Patients
Cushing's!! is a group I have for Cushing's patients or those who think they might have Cushing's on Facebook.
Battleground Diagnosis is also on Facebook on Fact vs Fiction of Cushing's.

Check some of those out please. The more support we give one another the better!

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.

5 Things Every Person Living with a Rare Disease Understands

I am really excited to share this article to you all!! It has my good friend, blogger and Co founder of our site Cushingstories.com in it! They feature quotes from the both of us. I am so proud that Novartis is taking the time to really talk about Cushing's and Advocating for it. Rachel and I both have Cushing's and really want ppl to understand it. This is just the beginning! Novartis is making great strides in getting awareness out there for our disease and many other Rare Diseases also. Please check out the article! #RDD2015 #GetLoud #Raredisease #Cushing's

http://www.novartispharmaceuticals.com/en/stories/detail/5-things-every-person-living-with-a-rare-disease-understands