A shot in my butt....Adrenal insufficiency is no joke!

Happy Halloween....my first real Adrenal Insufficiency day:( But I learned a lot, let me tell you.

How did it start you might ask? Well I am three months post op and went in to get my blood draws to find out how my cortisol levels were to see if I am still in remission. To do that you have to NOT take your cortisol for 24 hours. Somewhere in my head I thought it was 48 hours. Its not! I have now learned.

So I withheld my cortisol for two days. Went in and got 8 vials of blood draw to check cortisol, Acth, Growth Hormone, Vit D, Thyroid etc... I knew that I would be taking my cortisol right after my blood draw, which I did. While I was there though I was asked if I wanted a flu shot. I thought of course. So I got one of those too.

Four hours later I am feeling really achy. Like I am low but I just assume its the flu shot because sometimes it can give you flu like symptoms. One more hour later and I just am really tired and not feeling well so I go to bed really early.

I wake up in the middle of the night and vomit. I am thinking "seriously I shouldn't of taken the flu shot". What I didn't realize was I was going into Adrenal Insufficiency. I was aching so bad I could barely lift my arms. I was so sick to my stomach. I would take my cortisol and it would come straight back up. I took more to try and keep it down with an anti nauseous pill. Finally my husband realized I was going into Adrenal Insufficiency and said its not the flu. I was getting to the point where I was so confused. I couldn't barely keep my eyes open. Thought I was sleeping 2 hours and he said it was 10 minutes. All I wanted to do was fall into a sleep.  I kept saying stuff I just would never say. I couldn't even open the bathroom door because my hands hurt. We emailed my Endo and he got back to me right away! So great to have a awesome Cushings Endocrinologist who emailed me back on his day off. He said take my sol-coruf shot right now and then 30 mg orally after. Then double my regular dose for three days and take it easy. My husband got straight to grabbing my emergency shot and put it in my thigh/butt area. Within 30 minutes I was starting to feel clearer. My arms started being able to move. I wasn't feeling so tired. But I wasn't all better. So I took the 30mg orally and started to feel better. Most ppl would have to go to the hospital for hydration and also another 100mg. So if this happens to you I would recommend going in. We live so far away I just went off what my Dr said to me. Each case is different though so please go to the hospital.

It was a scary moment for us. We live 45 minutes from the nearest hospital and I am so thankful that I had the shot here in my house. I have heard so many horror stories about this. People going into comas or even dying because they didnt get the shot or get to the hospital. This is no joke!

 Now its the next day and I feel like I have the worst hangover ever. I feel my head throbbing and kinda still a little nauseous but doing WAY better. I do notice also that I am feeling more stressed. I am sure that has to do with all the cortisol running through me. The shot is 100mg. I take 7.5 now a day. So I will be taking it WAY easy to get my body back to normal. I am also taking double my regular dose for three days like my Dr told me too.

So what is the moral of this story? Adrenal Insufficiency is no joke. Don't take it lightly. Look for the signs and symptoms of it and take action. I am lucky. I could of slipped into a coma or not gotten to the hospital in time or not had the shot with me. I am lucky I had my husband there because I started to get really confused. Many ppl are alone and we need to really figure out what are symptoms are. I learned you only do not take your med ONE day before your blood draw not two. Do Not take flu shot when you are withholding cortisol from your body. If you are thinking you need the shot....take it. Don't wait. Too much cortisol wont hurt you but not enough will post op.

Look at some of the signs and symptoms of Adrenal Insufficiency to be able to pay attention to your own body more. Its important. Yesterday I was lucky in so many ways. I want you to really pay attention. I know I will be:)

If you want to contact me please feel free to email me at Cushingscountrygirl@gmail.com or I have a facebook group called "Cushings!!" I will always respond back as soon as I can.

Going to leave you with some pictures of my kids....they still had their Halloween and Football Game with the help of my friends and husband! Thank you so much!!!

my daughter as Jack Skeleton

My youngest as Nypd

Great Tackle from my oldest

My two sons won their football game!

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.

Pituitary Surgery for my friend, and remembering mine.

My good friend Heather is going into her pituitary surgery tomorrow morning. I have all this excitement for her because I know what can happen, the changes that can happen for the better, once the tumor is out. I had pituitary surgery 3 months ago with the same Neurosurgeon at the same hospital. I am so proud of her and how far she has come and how hard she fought listening to her body. Thinking back about the surgery it really does amaze me how they go up the nose to get a brain tumor out. Although I am sure she is scared of pain or of complications or whatever thoughts may run through her head....I try to keep it positive because it IS! This surgery changed my life. It made me go into remission. Did the first couple days suck because of nose packing's? Well yes....BUT it wasn't nearly as bad as I thought and was so manageable with a little pain medication.

hour before surgery

My life changed that day and I am hoping for my friend her life changes tomorrow for the better. We both know some ppl who have had more than one surgery BUT we know SO many more than have only had one. Either way, whatever happen, I am going to be there for my friend. We met through a Cushings website. Its interesting how you connect to someone you haven't met in real life. We talk about it all....even our kids, normal lives, daily frustrations or joys. This disease may be debilitating and suck (sorry but it can) but its amazing the blessings that come with it too. So many blessings like finding good friends!! 

Tomorrow she wont be feeling the best but I have shown her my picture collage which I hope helps her and others. Because you see how fast you go through it. Heck I am 3 months post op and no one in my town can tell I ever had brain surgery. This can be a good and bad thing. Good we don't have the scars and shaven heads but bad because well you don't LOOK like you had it so ppl don't know. It is BRAIN SURGERY so you do have to take it easy for a long time. Recovery is key

After surgery

Nose packing, its out day 2-3 though

After just a couple days her nose packing will be out and it will be a breath of fresh air. It will be such a relief. Hopefully by this time she has crashed. Not crashing like not breathing and heart stopping (nurses say this is crashing). BUT Cushings Crashing! Which is when your cortisol levels plummet. It will make her feel like crap, but this is a crap we want her to feel like........................it means remission.........! I was lucky enough to crash on my first surgery. I felt like crap but let me tell you it was the best feeling in the world because I knew what it meant. Tomorrow I am sending her flowers. And as my BFF did to me the card will write "I hope you feel like crap. xoxo". 

packing out!!!

great support from hubby

 I pray for her that her surgery goes well. I pray she finally sleeps. I pray she feels like crap because her cortisol crashes. I pray that she is not scared but hopeful. I pray that she feels a difference in her symptoms as soon as a week even. I pray her brain fog leaves. I pray her family lets her rest and that her support system understands its going to take months to recover if not a year. I pray its speedy for her. I pray she goes in tomorrow morning calm because this is something she wants. I pray most for remission that never leads to another tumor. I pray....I pray....I pray for all those things that I wanted for myself and for all the things I want for all the cushies I know. And if this doesn't happen (which i think it will) I pray she knows that we are all here for her. That its okay and we will be there everyday after that to get her back in for another surgery. I feel in my bones though that she will go into remission.

two weeks later

less than a month out from surgery

Remission is still a long journey but its the uphill side of things! Its that light at the end of the tunnel. We aren't all better just because the tumor is out. Slowly though we will get better, start to see the glimpses of our old selves. Its a magical moment when those things happen, when we see the difference. And remember Heather that when you are in remission that you will still doubt and worry because you never want to go back BUT as I had to learn...........YOU ARE IN REMISSION TILL YOUR NOT!!!!  Go get em girl!!!

No sleep to SO much sleep

As many of you know who have followed my journey I have had Cushings about four plus years. When I look back at say four years ago...I would sleep good, maybe even great for three weeks out of the month. Then I wouldn't sleep well for about a week. This would go on and off for years. I just thought It was because I tend to over think things. WHAT??? a Cushie overthink something? NEVER! See I have noticed that in a lot of the Cushies I have talked to over the year I have been really online talking to my new friends that so many of us worry more than most.....even obsess.

Even our puppy slept all the time

Overtime I started to have shorter cycles and would sleep great for two weeks and then not sleep for two weeks. Just always chalked it up to having things on my mind or things going on in my life. Really that was true though. I would notice that a troubled time (something small like how am I going to get two kids to two games at the same time but other end of town) would keep me up like what I thought a "normal" person would do because they were just over-thinking something. I figured out later looking back though that it really was the stress of something that would push me to be more in a high state (cortisol). Sleep aids didn't work, natural or pharmaceutical. I tried counting sheep,

Plenty of sheep to count at our house

I tried taking hot baths and having decaf hot tea before bed. I tried so many things. Sleep just wouldn't come. I still had to function the next day with my kids and get them to where they needed to be and do what I needed to do. Even work. 

By the last couple months before my surgery however....I had more sleepless nights than nights that I would sleep. I think I had about 3 weeks of only sleeping 2 hours a night. I would be so frustrated. I would search to the end of the internet and back. Finally some nights my legs would be so antsy or I would look at my husband snoring and want to scream (ha) that I would just get out of bed and go clean or something.

Hubby going to sleep. Comfy bed why couldn't I sleep?

I couldn't wait for the one week that I would sleep. I know that depression and anxiety are a huge part of cushings. I thought though how could anyone not be tired, cranky or anxious when they only had 8 hours a sleep in the whole week. I had to keep functioning though for my kids, my husband and for me really. 

Then I had surgery July 2014 and WHAM! I COULD sleep!!! Amazing deep sleep!!!!! I EVEN dreamt! VIVID crazy cool dreams. I hadn't dreamt in so long because I never had a deep enough sleep! I am blessed to be able to sleep. I want to sleep all night and day if I could. Of course I don't. I probably go to bed around 10 or 11 just because I want a little quiet time once the kids are in bed to relax. I get up at 6am to get the kids up and get them out the door. If I don't have something to do that morning though....I go back to sleep till about 930. If I wasn't busy I probably could even take a nap each day. Its a rare occurrence though but when I get to its sooooooo nice. 

I often wonder when I will be able to be normal again. Not too much sleep or not enough sleep. I kinda feel like Goldie Locks trying out the beds. This one is too hard. This one is too soft. This one is JUST right! :) I just have to continue to feel blessed that I am on the uphill side of things. I AM sleeping and CAN sleep and I will always remember that feeling when I couldn't. I have to continue to remember I am in recovery and to not feel bad when I want to sleep. Often I get phone calls in the morning. I am awake but I don't think my brain is yet lol. I always pray I don't sound grouchy or like I just woke up when I didn't. I am just hoping that my friends and family understand. I am still recovering.......and one day I will sleep like a normal person.....whatever that maybe! :) 

Please feel free to email me anytime at Cushingscountrygirl@gmail.com
I also have a Facebook group called "Cushings!!" 
And always check out my co bloggers blog at onedelicateheart.blogspot.com

Night all......going to sleep :)

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

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