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

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.

Is it Remission? IS IT??

As you all know I am 3 months post op from having pituitary surgery to get a tumor out. I have had Cushings for at least 4 years but can go back about 6. I have been waiting on my 3 month tests to see if I am truly in Remission for Cushings Disease. This has been my mission.....to be in remission! Its everyone who has Cushings mission because we just want to feel better, get healthier, get our lives back! Today I feel like this lady!!!

I feel remission symptoms poking out more than my Cushings symptoms. In the last three months I have been now able to pick up almost 30 pounds instead of 10. I have lost 24 pounds even though I am still weening from cortisol. I sleep every night. No insomnia. My general mood is better. My hair is starting to grow back. I do not have high blood pressure anymore. I am not bruising at the slightest touch. I now get cold instead of always being hot and my life is starting to peak out! I am starting to see every single part of me repair although it maybe slow. My life is coming back! I see bigger and bigger peaks of me...of the Real Rae!
BUT................................I still worry. Am I remission? Or am I not? Am I in remission or am I not? Am I just getting better because they got most of my tumor out? Or do I have cells left and I just am feeling better and doing better but not truly in remission. I needed to make sure my testing was just as good as my symptoms were. Today was that day! I feel it was one of the best days of my life. Is that sad? Probably but this has been one of the battles that I hope will forever be over with! Its not easy by any means.

ACTH 13 (normal 6-50)

Cortisol at 8am blood draw 10.9 (4-22normal)

So I got all my test results back. I had 8am blood draw and I am in remission!! REMISSION! I have wanted to hear that for so long that I keep looking at myself in the mirror and saying to myself "Yes you are!". My cortisol is great now! So much lower than it ever was! These are great numbers for me to have. My acth has gone down so much! Even at the hospital on day 5 after my surgery  it was 25 so it has gone down to 13. To be honest guys...I am crying as I write this because I needed that validation from my numbers as much as from my symptoms.

I still need to remember that I am 3 months post op from a brain surgery. I have to remember that I am not that full on superwoman that I want to be. I have that peaking out and know its there. I have to be careful.I just had my daughters 16th bday party and it was a huge success. I knew it would take every last piece of energy out of me but with friends and family to help me it would be amazing. I have to remember to heal. I took that day and ran myself ragged. I will pay for that day for many days after but to me it was worth it. I found myself doing things that I couldn't do for a really long time. It was an amazing moment in time. I know that my daughter will remember her masquerade bday party forever because of it. Sweet 16! I had to do it....and I could! Before surgery there would be no way I could of done what I did that day. I even danced with my husband! I hadn't danced with him in years. I laughed! I had fun! I decorated and made it so she would remember this forever! I had great memories with her that I hope she will never forget. All this because my amazing Dr Edmonds, my endo Dr Friedman and my Neurosurgeon Dr. McCutcheon took the time and their knowledge to help me. These three men will always have a place in my heart for they gave me my life back! I am in Remission! Its a day to celebrate! Just like my daughters sweet 16......here are a couple pictures of that special day!

My daughter Cassie sweet 16 Masquerade Ball

My husband Ryan, My daughter Cassie and I

Ready for my first party after surgery (3 months)

My youngest son Jason Dancing

My middle son Joshua

My oldest son Jackson

Kids getting the dance floor set up

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

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