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

Tapering Steroids = SLOWLY...My Dog Has Diabetes

Hi guys Van here, I wanted to just give a little update on my status. So Weaning off the steroids is a pretty challenging job. Post surgery I was on 30mg and at first I was scared to take the hydrocortisone because after being inflicted with Cushing's, who would ever want to take more steroids? Curious to see if I really needed the steroids, I decided to jump from 30mg to 10mg and in two days I thought I was dying. Well, I learned the hard way like most cushies who are impatient and stubborn that without taking the correct dosage, you will feel like shit. So I would talk to other cushies and see that slow is the way to go when it comes to weaning. I decided every month to go down 2mg and it was working fine until I reached 15mg. I have been on 15mg for about 5 months and it was so hard for me to wean any lower. I would get nauseous, faint, and blue in the face. I felt like crying every minute of my day. My stomache turns inside out and my body starts to tremble and shudder like it's involuntarily crying.

 I get mad sometimes that it's been a year and my remaining adrenal gland has not started waking up yet. I notice that it seems to take longer for the younger cushies to wean and recover, that is strange since we are younger and we seem to bounce back faster. But from experience, most of the patients I talk to, I notice that the younger ones always take over a year to fully recover. So I must take that into consideration and not blame myself for my slow weaning. I also read in most blogs and patient stories that they try to do very small increments and taper slowly since it feels better.  I still don't know how some women can wean off after just 6 months or so but more power to ya! Ever since the trip to New Jersey I decided to taper a bit more. So I tried 12mg every other day and 15 mg ever other day. So far it was okay. I would say I have mild nausea and sometimes feel sick to my stomach but I have not have any trembling and fainting. After two weeks I decided to try 12mg everyday and now my nausea has increased and my head feels heavy. I do notice I am sleeping for longer periods of time but my sleep cycle is still messed up. Oh yeah I finally got a period!! After 3 months of my period disappearing again, that makes me so happy! A good plus is that I notice my chin is looking more defined the more I wean and I see my face looking more lifted. My mom told me the other day that I look younger like I was back in highschool YAY! I still don't feel young inside but it's good to hear from someone who knows how I use to look like to compliment me.

My period app taken a few weeks ago :)

 The other day I forgot my pills at home when I went out so I found some rogue pills in my bag that added up to 10mg. I took it anyway but like clock work the next two days, I felt so crappy. So, I think I will stay on 12mg for another few weeks then I will try the 12/10mg alternation. Slow is the way to go guys! Everybody is different, and eventually you will wean off fully. But do what makes you feel like you can to function daily so you can atleast enjoy your recovery and not be miserable during your adrenal insufficiency period.

So Rae told me she has diabetes insipidus, which is a condition which causes excessive thirst and urination due to hormone and kidney production problems. I immediately recognize this condition because sadly, my dog named Vankey a little corgi-jack has the same problem. He was diagnosed 5 years ago and at first we noticed all he did was drink his little doggie water bowl until it was gone then he would pee all over the carpet even though he was potty trained, he just couldn't hold it in. Once he peed everything out, he would start drinking more water until he was bloated like a balloon and urinate again. It was so sad because when I withheld water from him, he would whimper and shake and when I gave him water, he looked like he was about to burst. At first we didn't know what to do with him and thought he was just thirsty but we took him to the vet and the vet could not figure out what was wrong with him. After a few weeks we took him to another vet and described his symptoms and the vet immediately diagnosed him with DI. He then gave us some eyedrops to give to Vankey every day for the rest of his life. It's kind of crazy to think that my puppy and I got sick around the same time. And the amazing thing is that he was extra supportive and loving when I was sick. He usually has no energy and keeps to himself but whenever I felt sick, he would always be at my side. How strange that Cushing's is common in dogs and so is diabetes insipidus but we cushies may have to deal with the two. I know another cushie friend of mine who was diagnosed with DI a few months ago too. But to think that animals suffer as much as we do when they get sick, yet are so strong makes me feel inspired of their strength and capacity to love.

Anytime you need a friend Rae, Vankey is here >.^

Early Cushings and DI

We get eachother <3

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 :)

How this blog came to be....

I thought it would be good to tell you how Van and I got together to do this blog and why it is so important to us:) This is my side of the story:) 

 I got an email from Novartis Pharmaceutical Corporation asking me to come to a conference in New Jersey. This meeting would be called Cushings Disease Online Influence Advisory Board meeting. I had to really think and pray about going to this as I was only 2 months post op when I received the email. After many phone conversations with Nicole Riley the Director of Public Relations I decided this was the experience I needed. I want to help other Cushies like myself and if I could help a company that has the means to help the masses.....I wanted to help them. 


2 weeks later I was on a plane from California to New Jersey with my best friend (cant really travel alone yet as I cant pick up my luggage lol and am only 2 months post op).

I left my husband to tend to our Four ...yes four teenagers. He was all for me going to find out information and to tell my story. Do you feel bad for him? hehe....P.s he did great as usual!

The first night there we were to have a dinner to get to know the other Cushies that were there and meet the staff of the Novartis group. I swear I was the last person to show up at the dinner and as I sat down..............there she was! :) It was Van!! I recognized her right away because when I first diagnosed I went crazy on You tube looking at before and afters and she was the first video I ever watched. She was like my lil rock star. I leaned over to my BFF and said..."I am going to tell her what she means to me". Later during dinner I had my chance. I spoke up (a lot because I am a talker) and told her how she influenced me so much and how I was so happy to meet her. From that moment on I knew we would be friends. **** I swear I am not a stalker hahaha****

The next day was the conference. We learned a lot. We learned about how to get our stories out there more and the facets that we could do. 7 Cushies and Novartis staff talked about how to get the general public to know more about this rare disease. We talked a little about our journeys. We talked about the drug Signifor that we learned was for those who couldnt have surgery or wanted to lower their cortisol until they could have surgery. It was nice to know their were more than one option. Especially for me because my tumors were so close to the carotid arteries the Dr's weren't sure we would be able to do the surgery. Most of all though we talked about being advocates, getting information out there. The right information. the other Cushies were amazing and I was so thrilled to meet them! Rachel Wilson and Mary O were some of the Cushies we met that are instrumental in Advocating Cushings as well!

Novartis Team and Cushings Patients 2014

Later that day Van and I were able to talk. We talked about how our symptoms were different, how our diagnosis went and how we are doing on remission. We talked about trials and tribulations. We talked about weening from cortisol after surgery. We talked about a lot. But mostly we talked about how we want to help others and how even if we just reach one person and are able to get them to diagnosis then we would be excited.

The conference ended. Novartis did an amazing job. Really helped us in knowing how to reach the public. Van was found through her other blog and I was found through my Youtube videos. We knew though that we could do more. I called Van when I got back to California. I am sure she thought I was crazy lol. Told her I thought it would be great to have a blog with the two of us because we have such different symptoms and journeys. I was afraid she would say no because I had never done a blog before. I told her to think about it and get back to me. It didnt take long! She is amazing and so sweet! The first text I got back was an idea on the name of the blog. Thats when 2cushiegirls began! All from a meeting of two ppl at a Cushings event. I cannot express how glad I am that I decided to go!

2cushiegirls

 Now you can find us through blogs (this one and Vans http://onedelicateheart.blogspot.com 
and my Facebook group cushingscountrygirl@groups.facebook.com. Dont forget we also have Youtube pages...Rae Collins and Onedelicateheart. Now we have also put ourselves out there on Pinterest, Instagram and Twitter. Thank you to the Novartis Group for really helping us to want to help others using our own Journeys!! If you are a Cushie....we would love to hear your story also. Its all about getting our journeys knows and all about information so maybe we all can help just one person! 

Disclaimer: Novartis paid for our trip, meals and lodging while at the Conference.

#raredisease, #cushings, #novartis, #signafor, #2cushiegirls, #symptoms

 
 

Van and Rae Symptoms list

Van here guys, I made a picture comparison chart of Rae and my symptoms. As you can see our symptoms are quite different and also our appearance changes. My doctors told me that my acne is not normal because only pituitary patients get severe acne and I was adrenal however, Rae is a pituitary patient and she did not have the acne. Also I had the orange hands that was not listed as a symptom but I did read cushies can get this. Here is our the list we came up with. SORRY CLICK ON EACH PICTURE TO VIEW FULL SIZE.

cushings surgery pituitary

Van's Introduction to Cushing's

Hi guys my name is Van. I am 25 years old living in Houston TX. I got a degree in Fashion Merchandising during the time I was sick with Cushing's Syndrome but now I want to study creative writing. I live with my loving boyfriend (Muffin) and my two adorable pups Vankey and Rascal. I enjoy eating good food, I am a shopaholic, fashionista, and love to travel. I have my own blog called http://onedelicateheart.blogspot.com that blogs about my journey and to raise awareness.

Muffin and I High school sweethearts

Rascal and Vankey

I had cushing's for about 5 years before getting a true diagnosis. Most doctors ignored me because I did not look sick enough or Cushinoid enough due to the fact that I did not have a huge weight gain (though 25lbs is still a whole lot for my frame). Last year my period stopped for a full year and I had extreme cystic acne all over my face and neck. I still had the moonface, insomnia, fatigue, hirsutism, hairloss on the head.. The whole deal. My depression and anxiety became so severe that I wanted to end my life many times. People could not understand what I was going through and doctors ignored me. Finally I had a moment of realization googling my symptoms and WEBMD said Cushing's Syndrome was possible. My boyfriend and I laughed it off because it said "rare disease" so we took WebMD lightly. Still, I felt that I needed to checkout my hormones so I went to see a endocrinologist. After many tests, labs, scans... Last year I was diagnosed with an adrenal tumor. To my horror the doctor said I was pre diabetic and needed to take action immediately. I had surgery (adrenalectomy) which removed my whole right adrenal gland that had the tumor in May 2013. It has been a year and I am still in Recovery which means that I am waiting for my remaining adrenal gland to start producing vital hormones. I take hormone replacement called steroids for the imbalance.

By looking at me I seem to look pretty normal, but I still suffer greatly everyday now that I have Adrenal Insufficiency. I am tired, depressed, and lack appetite. My periods came back and now it is gone again. My symptoms have improved but thing's are not how they use to be. My quality of life has changed greatly. You can read more of it on my blog. It is just part of the rollercoaster we Cushies have to deal with in our journey. Though everybody's journey is different and unique. 

Cushing's has taught me so much and I hope to pay forward what I have learned to the public. Keep reading and we will go into depth in our next few posts. Our main goal is educate people on how complex Cushing's can be. Also that one day the world will understand what this mystery Cushing's is all about and people can be treated and cured before it takes away too much of their life.

When I met Rae, we immediately were on the same wavelength. Mostly by the fact that she already recognized me by my videos on youtube and she is such a genuine and sweet person. The interesting thing is how we both suffer from Cushing's however we have opposite symptoms.. as you can see in our "during" photos we look quite different with our appearance and symptoms. We will make a chart and compare our different symptoms. It just proves to show that you cannot judge a cushing's patient by their appearance. I hope that this blog will be useful for other cushies like me or Rae. We will continue to advocate for Cushing's and will be 2cushies for life. :)


Here are my videos please watch fully on youtube to see the captions and comments. Please like and share if you think you may have cushing's or share to someone you know. Thanks for reading! Let's get this started Rae!!

 

Cushing's Video Part 1

 

Cushing's Video Part 2 (recovery)

 

                                          My acne Video

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