A week from hell? Or was it?

Understanding Cushings by #Novartis

I have had a week of craziness. One of scary AI events to one of victory and fun and happiness. I guess that is a Recovering Cushies life. I have good days and I have bad days. I guess I will start from exactly 7 days ago. Just to give you an idea of my week

Monday-I woke up with my throat killing me for the second day. Made an appt to go see the Dr but that never even came. See when you have a fever, or are in pain, or have a sickness after having pituitary surgery you have to stress dose. Before surgery my tumor would create me to have excess cortisol. After my surgery and now that the tumor is out I am retraining my body to produce its own cortisol therefor I take it in the pill form. When you are sick your body eats up the cortisol or sometimes its hard to even keep it in your body because of vomiting, diarrhea etc...   This was me. I couldn't keep my medicine down. I started to vomit, already had a fever, my throat was killing me, started to get really confused and my hands and arms felt like they weren't working. My husband thankfully was there, gave me my 100 mg emergency Solu-Coref shot and we went into the ER midday. Once at the ER my blood pressure was sky high which is usually abnormal for someone who is going through Adrenal Insufficiency but I am one of those rare ppl who it shoots sky high and then plummets fast. That's how I knew something was wrong besides that I was loosing my thought process and my arm functions. My blood pressure has been normal since surgery but that day it was 194/133 and my heart was racing. Thankfully the ER doctor got ahold of my Endo and he said yes Blood Pressure can go high and to treat her. I had my emergency letter so they gave me another 100mg of Solu-coref, 2 bags of IV fluids, tested me for strept (I was positive), gave me pain meds and then tested my electrolytes and salt levels. Once I was feeling better and stable they let me go home with a prescription of Penicillin.

Tuesday-Woke up still feeling bad. Went by Dr orders and tripled my cortisol intake for the day to be able to keep enough in me since my body still had temp. Took my antibiotics by mouth. Stayed in bed all day. Got up just to go to the bathroom. Fever finally broke that night.

Wednesday- I woke up on the third day and my throat was killing me. Hurt to swallow but forced fluids down. Took my antibiotics and my cortisol as instructed by the Dr. Was not feeling well. Felt overly tired and felt as if I was getting low again. Stress dosed again. Started getting nauseous and then couldn't keep anything down. No fluids, no medicine.....started to once again go into Adrenal Insufficiency by not being able to lift my arms well or keep any meds down. Started to want to just sleep, sleep, sleep. Husband once again gave me shot and took me into the ER. This time they knew I was coming and had everything set up for me. Got another 100mg Solu-coref. Iv bags of fluids, Pain medication for my head from my blood pressure that was once again sky high on the way to the ER and then plummeted by the time I got there. We live 45 minutes from nearest hospital. THIS TIME though they gave me a shot in the rear-end of Penicillin since I had not been able to keep my meds down. I got replacement fluids and was released to go home 5 hours later.

Thurday- Decision day....I woke up and my throat felt better. I still sounded horrible but I could swallow and I felt so much better. I didn't leave my bed much though because I had a big decision to make. Two of my four kids were having a Championships game in Football. Not only was it important to not one BUT Two of my kids but it was the first time they had been to Championships since 2003. This was a big deal to them. I had been to every one of their home games and went to their playoffs and didn't want to miss their championship game. I still didn't feel well enough to even think of going yet but I would really think about it. By Friday, if I felt better then I was going to go. I decided that we would just stay in a hotel that night so I could go to the hotel and rest before and after the game. I didn't want to play with fire but I didn't want to not be there for my kids. Its a fine line. To me I felt like this is something they would always remember though. I knew if I felt better the next day I would be going.

Friday- Game day! I was feeling a lot better. Still not perfect but I decided I was going to be at the game. Told my boys I would see them later that day. We took the 2 hour drive and checked into the hotel. Made some posters, got new rain jackets and even bought a couple new winter clothes for the game. It was sprinkling when we left. Once at the game I kept having friends and family watch out for me. I couldn't scream (didn't have enough of a voice) but I clapped and cheered. The smiles on my boys face was unforgettable. They were excited, pumped up and happy we were there. That night it rained a lot and I knew that me being there probably wasn't the best decision in the world. I wouldn't of asked or even told anyone else to do what I did.....but for me....and my life....it was what I wanted to do. I know this is going to sound dumb to some but I don't want to live my life with regrets. My mother died at 55 years old from cancer and the one thing she said to me was to LIVE, LAUGH, LOVE.....so for ME this is what I was doing. I am proud to say that my boys and their whole awesome Cardinals team WON!!!! It was such a big celebration and to see them jumping up and down screaming was awesome! Even better was when both teams came together and prayed. It was a site to see. I am so glad that I went. I knew I would have to take it easy for the next few days as I was still recovering but it was worth it to see my sons faces on this day in their lives that they will not forget.

My boys so proud of them

Bundled up

They won!

Saturday-Monday... We slept in and decided to stay a couple days at the hotel. It would be a time for shopping, movies, going to Turtle Bay Museum and Toytopia. I am thankful I have the husband that I do. I went out when they went to eat and went to a movie or two in the next few days. The rest of the time I was back at the hotel resting or sleeping as my family went shopping, swam at the hotel, got haircuts, went to the bird house etc.3/4 of the time I was in the hotel resting. I am a lucky gal. I didn't get sick after and I am continuing to get better. I know in the future I will definitely have to remember to watch it when I get sick. I will have to make sure that I rest and recover. I am not saying I would want anyone to do what I did. It was just the right decision for me and my family. I have no regrets for this week. It started off pretty scary and I am really new at this (being only 3.5 months post op) but I am learning along the way. I am also so thankful for all my friends, family and Cushing support who tell me how they feel. Are honest with me and yet not mean. Who help me to learn as I am going also. I want to say thank you for that awesome support.

Now this coming week....Thanksgiving.....

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

Gross Pics....the ugly disease....But this is ME.

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.

Cushings Blogs of friends of mine!

Its always good to see a story or be able to relate to someone. I wanted to share just a couple of friends who said I could share their sites for others to see. These are all Cushies that are on my facebook group called "Cushings!!" please feel free to join at anytime! These are not in order but thought it would be good for you to have a couple to look at:)

Health in Sickness By Van   http://onedelicateheart.blogspot.com/

Living with Cushings By Rachel  http://cushieworld.wordpress.com/

Livehard.livestrong by Nicole  http://cushiequeen.blogspot.com/

My life as a girl with Cushings By Tiffany  http://www.youngcushie.blogspot.com/

Cushings with Moxie by Moxie   http://cushingsmoxie.blogspot.com/


Muskeg Farm by Catherine  http://muskegfarm.blogspot.com/


and of course this blog that Van and I started to show you the difference between two Cushies:). These are just a few of many blogs that really have the journey and story of cushings. These ladies are all fantastic. Its not easy to put your life out there.....but its worth it if you can help one person or many!

My good friend Rachel and I are working also on a Cushingstories.com website. We would love to be able to put on your videos or stories onto our site for more ppl to see. Please comment below or email me at Cushingscountrygirl@gmail.com so we can add it to the site. It will be up and running in a few weeks. Just need link to your video or blog so we can share it with the world.....Thank you in advance! We just want to advocate and get Cushings known by more.

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!