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

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

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.

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

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 :)

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.

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