Van's Recovery List (PICS) and Good news!

Hi guys! I apologize for not updating in so long but don't worry I am still very active in responding to my emails, youtube (onedelicateheart), and instagram (1delicateheart). Ever since coming back from the New Jersey trip I have gotten so many emails and messages from Cushies and people who are in the diagnosing process.  So feel free to contact me from those various social medias. Best way to get a quick response is to email me at yumnguyen07@yahoo.com 
If you guys haven't checked out Rachel and Rae's website cushingstories.com then you better go and check it out now. I am so proud of these ladies for doing so a huge thing for our cushie community. There are stories, contacts, and videos for you to learn more about. Please share <3

So I have big news! I have fully weaned of steroids for 3 weeks! My doctor told me that my left adrenal gland has woken up. It is functioning at a low level so my adrenal gland is not producing like the normal average person but my body has adapted to the low levels so I decided to quickly taper off the rest of the hydrocortisone (Cortef) because let's face it, it is a pain in the ass to take and still felt bloated from small amounts! Well, how am I feeling? I feel almost perfect. Like I am 97% there. There are times I notice the change in energy and feel great then sometimes I feel lethargic and faint due to the fact that I have used up the little amount of cortisol reserve that I produce but nothing that I have not already been through and it is bearable. I still get very faint often but I think I need to start eating a diet that supports the hypoglycemia issue. And of course how do I look? Well here are some photos for you guys to see =]

  These pictures are all post op and recovery. and no I did not get facial surgery during recovery, it's just really good makeup tricks I started learning that I want to share to you all soon! But now Here is the breakdown of my recovery. This is not the most organized list sorry! lol

6 Month Post OP: moon face was shrinking, acne growth stalled, skin got a bit drier, still bloated, face still felt heavy (hard to smile or open eyes wide), droopy skin, reddish orange skin, no hair growth, depression, anxiety, nausea, hello collarbones! dry eyes, adrenal insuffiency was at it's worse due to tapering. high bp but pre diabetes was gone. Sleeping all the time. Lazy, no motivation. panic attacks. Crying all the damn time.

10 Month: Face continued to shrink, features feminizing (eyes and lips look more pretty??), smiling is easier but still felt like cheeks were heavy, acne fully stopped, skin healing, hair growth (baby hair halo) not so healthy looking though crinkly hair texture, period was back (still irregular), buffalo hump shrinking, itchy dry skin to the point I can't sleep, body adapting to adrenal insuffiency, acne scars, less depressed, up and down emotions and mood, nausea, faint, period still irregular. Insomnia. undereye bags circles. Panic feelings, no attacks.

12 Month: I have to say I felt much happier after a year since the surgery, My face is almost back to normal, features are slowly defining, smiling is easy, hair is starting to regrow fuller but texture is still crinkly, no more acne problems, super duper dry skin, less crying, less stressed, I notice myself being funny and enjoying life like never before, began socializing again, face dimple is starting to show, jawline, cheekbones and nose looking slimmer. less nausea, Less paranoid. Insomnia. Doing normal activities. Shopping addiction due to weight loss and increased confidence LOL

14 Month: period came back regularly (feeling prettier after every menstrual cycle), skin is glowing, reddish orange skin fading, acne scars healing, less hair fall, wondering if this was as good as it gets??, face features more defined. fainting, low bp, dizzy, Mood is pretty stable but I still will get cranky when I being weaning off more steroids, more confident, no more sadness and resentment in my heart.. I literally woke up one day feeling like all the bad stuff and people in the past did not affect me anymore. Truly a miracle. Is this it? Will it get better? Sleep is up and down.

16 Months: face is back to normal, dimple is fully visible, jawline is chiseled, sleeping more, period is irregular again (due to low amount of steroids?), hair is healthier and shinier better texture, acne scars are less visible, night sweats, fainting, dizzy, extreme low bp (good thing? idk), satisfied with how i look but still worried if I still would have the highs and lows of moods and dizziness.

18 Month (fully off steroids): Face got even smaller less bloated (yeah I didn't know that was possible), I can now even smile with my teeth effortlessly, skin fully healed, scars are not as visible, I feel confident enough to go makeup free while running errands, people complimenting me, strangers think I am younger than my age, my mom says I look like I did back as a senior in Highschool! Thanks mom. Still faint and dizzy, no more obsessive thoughts, no more paranoia, no more guilt, anxiety, or shame, no more negative feelings. Mind is at peace, skin still dry, period still irregular but still coming, facial features look lifted, eyes are brighter, eyes are less dry, feeling motivated, not afraid of speaking my mind. No more panic attacks! Still food sensitive. No more waking up at 9am to take Cortef yay!
 

My body Recovered:
Less joint pains, muscles are starting to look more defined with little exercise around month 9 post op, no dieting, appetite is normal. No more feelings of being ravenous with food, body is getting a more feminine curvier shape, fat is relocating to where it should be instead of on my stomach, buffalo hump gone. I can feel my spine, collar bones, less body and facial hair, more hair on head lol... no more orange hands, still food sensitive to salt, sugar, and MSG. Can drink coffee without panic attacks. Can lightly workout and lift light weights with less muscle pain. Still cannot run or do any hardcore exercise training (not that I ever want to again). more flexible. no more bloating in weird places. More active. Feet shrank 1 size down (size 7 to 6-5.5), no more rapid hearbeats. Feels like I can breathe again. The heavy brick feeling on my chest is gone yay! Digestion is greatly improved.

That is all I can think of right now. I am thrilled that my future is filled with more optimism. I am glad that majority of the stuff is reversible. I am still stuck with a few minor health nuisances that Cushing's affected. I really don't think it is going to ever get me down because everything that I prayed for I have been given by God and the Universe. This whole experience really shaped me to become who I am now. I am stronger and humbled than I was ever before getting sick. I am glad that I got to meet so many people and understand the struggle of getting everything taken away from me. I learned the lesson of compassion, patience, and gratitude.  I will continue to advocate for Cushing's and rare diseases. So I will always come back to blog and update my life. I also want to be more active on my youtube channel and posts some videos of me talking about various Cushie subjects and giving advice to Cushie patients and also post my beauty and health regimen. I just need to get over my fear of talking to a video camera lol. Thank you guys for reading this post and supporting me through this journey. I will never forget. Much love!

Before and after

Cushingstories.com Thunderclap Campaign

https://www.thunderclap.it/projects/21819-misunderstood-and-misdiagnosed/embed

Please go support this campaign by Cushingstories.com to increase Cushing's awareness.  Once we get 100 supporters (by February 22, 2015), our campaign will be forwarded to celebrity Thunderclappers to pick causes they care about and tweet to their followers. Its free and easy as just clicking a button. I can see who has followed it so please let me see your smiling face!

Thanks for your help!

NEW CUSHINGS WEBSITE

I would like to tell you all about the new Cushing's Website. It was made by a good friend of mine Rachel Wilson and I. When I first found out about Cushing's I didn't know where to look for Videos, Blogs and Stories of others. This website has it all!!!! It just got launched today after 4 months of working on it! Please share with others......you never know who it will help out!

www.cushingstories.com

Thank you to all of you who submitted stories, videos or your blogs to help others. Without you we couldn't of done this!

Love, Rae

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.

RIP :(

As I look at this blank page with so much on my heart I want to say its hard for me to know where to start.

First I will say that this week my friend was driving to school in our truck and went off the road, rolled numerous times and went straight to God to be with him in his glory. Now I want to talk about all the good!

Debbie and Cameron

 My friend Debbie Card. She was a single woman living on her own at a ranch  with the world at her feet. She was the Secretary of our school here in Big Valley. Big Valley really isn't big though. Its formed of a couple of towns but each town only has about 250 ppl in it. So with that many people you can be sure that she made each and every person smile! So within the two years we have lived in Big Valley I had gotten to know my friend by volunteering at the school. She was so funny because she was like me....she would talk and talk and talk. The thing that was cool about her though is she had a small accent and would always say words like "wee little one" that would crack me up. After about a year of knowing her, her always being so gracious to everyone,(even our family) we heard she needed to move. She had this giant dog named Finnegan and the neighbor dogs would make her dog bark all day long. We happened to have a house for rent. I was worried she wouldn't want it because although it was a 3 bedroom it was on 3000 acres and she was a single woman. She made it very clear to me that her dog and her would love to have that "majestic beauty" around them and she was a "rather big girl who could handle it".

After she moved in we became even closer friends. Not because she was renting from us but because she was fun to be around and also because we moved next door 400 acres away.

What can I say about my friend? So much. To type it ALL out would be so hard. I will share some of my memories that I have of her. Memories that are just ours and will always be in my head. First because we lived close every time one of us was sick with a cold we would have the kids drive from one place to the other offering homemade chicken noodle soup or gumbo. Debbie always made everyone feel like they were kings or queens. She would rave about my cooking and let me tell you its totally just normal cooking. She always was so positive!! Always. Even when she was sick she would laugh when I would come in my pjs telling me that "man I was a super star dresser lol". We laughed a lot. I wish I would of spend more and more time sitting and drinking tea. I regret the fact that I felt my life was so busy with four teens that I didn't take more time out of my day to visit with her. Debbie was a hard worker. I remember worrying because I didn't see her home so I would call her. She was still at the school at 800 at night saying she was just trying to finish up with stuff.  She loved animals so much. She watched our house so we could go to the kids Championship game and send me a text every 4 hours to give me an update on our dogs:) She was an amazing artist too. We took a art class at the school together. Don't laugh now but we were the only adults there. I went at first just to be able to spend more time with my daughter but Cassie being a teen I ended up sitting by Debbie. I think we got in trouble for talking more than the teens did ha! I would text her my newest painting (mind you I have never painted before) and she would always tell me how wonderful I was. Her kitchen was full of awesome art supplies and she had an art room. Told me to come over and lets play art together anytime. I said whenever you want me to come to call and I will be there. She told me if I was going to be stuffy then she will make me a gold plated invitation to her house. She made me laugh. Did I say she didn't have a mean bone in her body? She used to crack me up so much. I always told her how beautiful she was and how I wish I could steal her skin. Did I say she gave the best hugs too? And since I am babbling and not doing this in any order because I just want to get my feelings out...I remember when she had one of the kids over to her house. She was watching him till he was able to go home, he had just been at our house. We were all trying to help his parents out. Well I had two kittens that this little boy didn't want to leave. So we took them to Debbies with us. Well lets just say after the little boy went home, she wouldn't let the kittens go back to our house. She was a lover of animals. When I first met her she had Rosie her Saint Bernard.

Debbie and Rosie as a pup

Rosie passed and then she got Finnegan. Finnegan oh Finnegan he is a huge and I do mean huge pup that is a scardy cat of everything. We used to laugh at that. Finnegan did go straight to me which was always surprised at. I saved that dog so many times because I didn't want to have to call Debbie and tell her that Finn was missing or on the highway (he can run a long ways when he would follow her when she left)or worse that she didn't have him anymore. I didn't want to have HER heart broken.

Big Ol Pup Finn

Debbie was an amazing person who loved art, people, animals and was a chatty gal who always was humming:) She loved her sons beyond all things. Its funny when you have never met the kids of your friend because they are grown and live far away but you feel like you know them.  I will miss her so much. I feel the first thing she felt in heaven was a hug from her son Collin and her dog Rosie. I am so thankful that she was able to see her other son a couple weeks before. You just never know but she always made away to go see him no matter what.

Now we have Finnegan and those two pesky cats. I swear Finn is sad like me and misses her. We have cried a lot together. I think that Finn knows how I feel and I know how he feels. Mind you we have 4 dogs already but I feel like a piece of Debbie is with me right now. I miss her. He misses her.

We all miss her. This week was a very tragic week. As all of you know I am recovered from Cushings but cannot deal with stress a lot yet. If I have too much stress or get sick with an illness I go into Adrenal Insufficiency and in the 4 months I have been "in remission" I have been in the ER three times. Its been such a hard week and everyday I have had to stress dose a lot on cortisol.  Why am I telling you this? Because...

I am alive. I am able to be happy or sad or mad or angry or blissful or full of hope or full of life. My friend Debbie is not. With all the stuff I complain about in my life through sickness I have to remember that I am STILL HERE. Debbie is teaching me even though she is not here on earth anymore. She made such a mark in my life in the last two years and never once said something negative. Do you think she didn't have problems? She did. Do you think she didn't have illness or heartache or even bad days? She did. She had many days of wondering. Days of depression of missing her son who was in heaven. Days were she was sad or mad.  Everyone does because we are human. Debbie CHOSE to live her life, to be positive and to LOVE. She complimented every person she met. She made you FEEL like you were apart of her family since day one. She would tell me that I was in her "inner circle" which made me feel so good. She always made everyone feel good!  She was amazing. When people pass we try to remember the good and not the bad things about them. With Debbie....there WAS only good! May she rest in peace. Its hard for me to say it was in Gods timing but to me it really is. She is dancing with her other son now and I know she is looking down at her other son, watching him and is going to help him be ok.

Say your I love you's, compliment people, make them feel good about themselves, help others, love others, love animals, be compassionate, work hard, think outside the box, play, do art, be creative, always be helpful.......................that is what I have learned more from my friend. I just wish I would of learned this lesson more so before she passed than after. I love you Debbie! Your spirit will go on. Finn and I are going to keep talking to each other till we heal, but we know you are wrapped in Gods tender arms. I love you! Thank you for being you! Thank you! Finn and I will continue to talk about you and I promise you that we will make sure that he is ok! We love you.

Long weekend and not going to leave each other sides

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