Showing posts with label teens. Show all posts
Showing posts with label teens. Show all posts

Tuesday, November 25, 2014

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.....

Monday, November 10, 2014

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