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

3 months post op!

I am three months post op today! I cant believe its been 3 months already. So much has changed in just three months from having my pituitary surgery at MDAnderson in Houston TX. This is me now!

3 months post op today!

Ok, Ok so we all know how to make a camera make us look better right? Especially us Cushies we have learned to take pictures from higher up to make ourselves look thinner lol. Heck my husband even knows the drill:) Ok so this is the real me.....

3 months post op and straight on pic

In the three months since my surgery so much has gotten better! I really wanted to write a blog about what has been happening! I am feeling very blessed for sure! Lets start off with one that I have a pic for....My hair is starting to grow back. It is really thin and I have had to cut it pretty short to make it look like it has some style. I am pretty excited because I have new hair growth and whispies now. Check it out...!

This makes me pretty excited!!! In three months also I have lost 23-24 pounds. I honestly thought that weight would just FALL off of me which it hasn't. I haven't been dieting or changing anything so I am pretty happy about that weight loss. I think I am gaining muscle too so that I am sure will change my body and maybe not the scale. Good thing though is.....I know if I do choose to diet that I WILL lose weight this time. I had dieted many times and I would literally gain weight. It was frustrating so now I am really trying to get back into even wanting to diet. What else has happened in three months. I am now sleeping. I wasn't sleeping but a couple hours a night IF that. Now I sleep (if I don't have to get up to take kids to school etc) easily 8-10 hours in a row! THIS MY FRIENDS IS HUGE! My anxiety has gone down. I have no depression anymore at all. I feel like I am becoming myself again. Calmer. Fun to be around. Happier. I have stopped bruising so much and my skin doesn't hurt to touch it as much. Brain fog.....GONE!! I have trouble still with my short term memory but I even think that is getting better. My buffalo hump is going down a little also.....

before surgery buffalo hump

3 months post op buffalo hump some improvement

I am sure it will take some time for it to go away but I can see the small improvement! I have a long ways to go on recovering but that fact that I can SEE changes and FEEL changes are so nice. The best one for me is I am not antsy all the time and tapping my foot. I can stand still if I wanted:) I still kinda sway when I am standing but that is just because my hip still hurts. My blood pressure went from HIGH to now NORMAL! I didn't get diabetes or osteoporosis but I did end up with degenerate bone disease. My eyes seem brighter too. I dont know if that is a Cushings thing or not but they seem bigger and brighter to me. A lot of good has happened and symptoms are reversing themselves.

I still am not perfectly healed by all means. Although my muscle strength is coming back slow but sure...I have a hard time keeping my arms above my head for any length of time and a hard time getting up from the floor or even my chair. Just today I was helping in a friends classroom and couldn't do some of the stuff. I kinda felt stupid for saying "hey I cant do that" but I had to and just know it will continue to get better. I have short term memory loss and still have a hard time remembering some things. I have my words back though. Before surgery I would be trying to say "Can you pass the plate?". I couldn't remember the word "plate" though. I would end up frustrated and trying to describe it (you know that round thing that you put food on and we use it for dinner). Now I have my words back and its very nice. That is one of the first things I noticed, besides that I could dream again because I had sleep. I still am a long way from being and looking like the RAE that I once knew. I am getting there though and each little baby step helps me to seeing ME again. This might be my new normal but I can take that for sure! I have many blessings.....and I hope if you are not in remission yet that you will have all those blessings and more VERY SOON!

Please feel free to email me at Cushingscountrygirl@gmail.com
Also check me out on Facebook at LaRae Jones-Collins or look up our group called "Cushings!!" on Facebook.

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

 
 

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.