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!

Before and After (symptoms)

So today a couple of my Cushie friends asked me to send them my symptoms list that I had when I first was having problems. While rereading it to send to them because its been almost a year now (four months post op though) I noticed that WOW things have changed! I am hoping this will give someone hope! But this is my symptoms and in parenthesis is what it is like now after 4 months post op.

• Inability to lose weight no matter diet or exercise (able to lose weight now)
• Central Obesity (stomach 2 inches smaller) 
• Weight Gain 47 pounds in 6 months 80 pounds in one year (lost 23 pounds)
• Insomnia only sleeping 2-3 hours a night (restful sleep 8 plus hours)
• Buffalo Hump (yep its getting smaller)
• Moon Face (double chin getting smaller and can see cheek bones)
• Hot all the time even in a cold room (now I sleep under the blankets instead of on top)
• Thinning hair especially around my bangs area (new whispies appearing!)
• Red, Flushed Face (no more hot flashes)
• Heart Palpitations almost every night 120s (Heart rate is at normal level 60-80s)
• Blood Pressure on daily basis 160/110 (Now 123/80s)
• Not much of a Libido (Yeah for my husband its back)
• Stretch marks all over stomach and corners of breasts red and thick (starting to fade color)
• Low immune system. Bronchitis 6 times and walking pneumonia in 8 months (bronchitis one time in 4 months)
• Loss of words and work call (less and less but still have short term memory problems)
• Anxiety every night and out the roof (Anxiety only when actually called for)
• Mood Swings. (Husband said those are WAY less :)
• Weakening of Muscles Before Surgery could only lift 10-15lbs (lifting 30-45 pounds now)
• Fatigue just had no git up and go (still tired but it is better and I am doing a lot more)
• Whiskers popping up on chin (same)
• Bruising without even noticing I was bumping into anything (no bruising)
• Thinning skin, hurts to touch sometimes (seems to be toughening up because doesn't hurt as much)
• Major Aches and Pains (minor aches and pains except when hip goes out)
• Very slow healing with cuts or bug bites (faster healing but still slower than normal)
• Concentration is VERY weak (able to start and finish tasks with no problem)
• Depression and don't have a reason why really (feeling much better)

So in 4 months there has been so much change! Amazing because I realized it but didn't realize it as much until I saw my personal symptoms list. There really can be a light at the end of the tunnel with remission. Not everyone will have the same effects. Some more and some less but it does get better! If you are not there yet please feel free to always email me at cushingscountrygirl@gmail.com and lets help you find drs or help or support. I am not a DR by any means but I am willing to help you find support. If you are in remission and would like to share your story please email me also. We are working on a website of cushingstories where all stages of the disease are addressed through personal journeys.

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

 
 

Van and Rae Symptoms list

Van here guys, I made a picture comparison chart of Rae and my symptoms. As you can see our symptoms are quite different and also our appearance changes. My doctors told me that my acne is not normal because only pituitary patients get severe acne and I was adrenal however, Rae is a pituitary patient and she did not have the acne. Also I had the orange hands that was not listed as a symptom but I did read cushies can get this. Here is our the list we came up with. SORRY CLICK ON EACH PICTURE TO VIEW FULL SIZE.

cushings surgery pituitary

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