My Rare Disease, My Story

Novartis.com

 

Oh where do I begin? Let’s start with when I didn’t know what Cushing’s was. Let's back track to the beginning.

The day I got diagnosed was my sixth time to the doctors office for bronchitis that year; it was my second time with walking pneumonia. I went in and cried to my doctor that I was barely eating, gaining weight, I was only sleeping two hours per night, my body always hurt, I had bruising all the time and swore that I was going crazy, had depression or was a hypochondriac. He looked at me and said, “You have Cushing’s I bet.” I thought "Is this man crazy? What is Cushing’s?" He examined me as this was the first time I had seen him. He looked at my neck and said that I had a buffalo hump, saw red and white stretch marks on my stomach. He reviewed my food log and saw I was only eating 1600 calories per day and had gained eighty pounds in a year and half and was still gaining.

I had a hysterectomy three years prior and felt like I had hormone imbalances ever since. Actually, I felt like I had those even before that. I always thought  the loss of muscle, the bruising, and weight gain was all because of that. It was from the hormones but not from that. I went to doctor after  doctor after doctor and they said my estrogen and testosterone was fine. Sometimes they would give me a pill for depression or more estrogen to cure my hot flashes and other symptoms. The depression pills never worked for me. I went to a doctor that gave me more estrogen and had their clinical psychologist call me to see if I wanted “had bruising, cried a lot, was 37 and must have a bad home life.” That made me SO mad! I wasn’t having a bad home life at all. I left that clinic and went to another one because of that. It was meant to be because that’s when I found Dr. Edmonds,my primary care physician, the one that said I probably had Cushing’s.

​After Dr. Edmonds said I needed to test, he set me up for two tests: an 8 a.m. cortisol blood draw and a dexamethasone test. One came back positive but the other was negative. Then my doctor thought maybe I didn't have Cushing's. By this time, I had looked up everything I could on Cushing’s and started researching everywhere I could. I found some videos on Youtube, a couple of websites, blogs and Facebook groups on Cushing’s. I researched Cushing’s specialists and decided to go to, in my opinion, the top endocrinologist at the time, Dr. Theodore Friedman (or "Dr. F., as we call him). He listened to me. I tested A LOT! I even tested wrong at first, by testing when I felt bad instead of testing when I felt better (on a high). At first, some of my tests came back normal because I cycled from high cortisol to low. After learning more and getting help from other Cushies by figuring out when to test, my tests came back high, high and high. I went in for a MRI (you should always get a T3 MRI) and they saw something that COULD be a tumor. I was scared and relieved at the same time. What a weird feeling to have. My endo saw a tumor on the left side and my neurologist saw one on the right. It was very confusing but I was finally diagnosed in the beginning of July 2014 and had my surgery scheduled three weeks later in Houston, Texas at MD Anderson, even though I live in California.

Once I was ready for surgery, it couldn’t come fast enough. I wanted to get rid of the tumor and get back to a normal life. By the time my surgery rolled around, my muscle wasting had me only able to lift about 10 pounds. I still wasn’t sleeping. I was angry at nights and had so much anxiety that my foot was tap, tap, tapping all the time. I bruised if someone touched me hard or bumped me. I was depressed because I felt like my family would do better without me around. I am a mother of four teenagers.  It was hard because I wanted to do so much for them. I felt bad that my husband was picking up the slack. I wanted ME back! I wanted to ride my horse, shoot my bow, cook dinner and be able to move the pot of spaghetti etc. NOW I HAD THE CHANCE!

July 25th,2014, I had my surgery. I wanted to jump up on the table to have my brain tumor removed. I had a calm that day and was prepared for it. My husband was by my side and I waved at him and said “See you on the remission side.” When out of surgery, we were told that they had found TWO tumors on my pituitary that were connected underneath. They felt they had gotten it all out. I was relieved.

It's now seven months after my surgery. I am starting to  lose weight.  I am sleeping every night all night long. My hair is growing back. I am not bruising. I can think again and don’t have brain fog all the time. I feel more like ME again. Every single symptom has reversed or is getting better. I can lift 55 pounds now! That a lot considering I could only lift 10. My friends, family and especially children see the differences and all for the good. I take it day by day because recovery is hard and I have to remember I am not going to be ME all in one day. I have more and more glimpses, though, of the old me. I am happier. I am happy to see the flip side.

I have really tried to become an advocate for Cushing’s. I have started a Facebook group called “ Cushing’s!!” that has over 800 members and is all about Cushing’s support. My friend Van and I started a blog together, www.2cushiegirls.blogspot.com. My good friend Rachel and I have worked hard on a website called www.Cushingstories.com. Its a place to go to see other patients stories. Not only is it their story but we have patient videos (in their own words) and tons of Blogs. We want to let people know there are others out there and have it all on one site. The stories of all of us. It’s why I decided from the beginning to YouTube my journey because that was the first place I looked for others like me. I cried on my first video. I almost didn’t post it. I decided that if I can help one person that it was worth the humility of it all.

 

 

There is a lot of information out there. www.Cushingstories.com is a AMAZING site. Also www.Cushings-help.org. My personal favorites are these blogs because they are real....and you really can see the journey of the person!

 

Living with Cushing's Disease is one of my personal favorites. Its written by a good friend of mine who is also the Co-Founder of Cushingstories.com. She is someone who is amazing at keeping it real and positive. She has had her struggles but has been in remission now for years! Check out her blog https://cushieworld.wordpress.com/

 

Moxie has an amazing site that is chalked full of information!!! She is an amazing lady who will always be there for you to answer questions. Please check out her site at http://www.cushingsmoxie.blogspot.com/

 

Then there is my good friend Nicci who is very real, raw and doesn't hold back what she is thinking or feeling. You should check her out at http://cushiequeen.blogspot.com/

 

I hope now you know a little bit more about my disease and have an understanding of what my family and I have gone through. Each day is amazingly better! As you can see on my blog that I am living and we are having fun! Just thought I would tell you my story!

Bless all of you. Thank you for reading my story. Please feel free to write me anytime. I always answer.  Cushingscountrygirl@gmail.com.

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

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

Cushings.....the ugly disease:( Okay first off I would like to say I have heard this so many times and I have to disagree! This is not the ugly disease. Actually would make me mad or sad when I heard this. This is a hard enough disease of which so many ppl have a hard time getting diagnosed. I am going to really expose myself in this blog with pictures that I am not proud of and never thought I would put out there for anyone or everyone to see. BUT I am going to because I want to show some of the signs and symptoms of what could happen and what did happen to me. First off I would like to say "I AM NOT UGLY....and none of what is happening to me or has happened to my body is because I wanted it."

hot spots that just appeared

My buffalo hump that grew

round moon face

bad stretch marks just appeared from thin skin and discolored skin

bruising for no reason

belly large and bloated day of surgery

one month after surgery...going down but so many stretch marks

I would show more pictures of some of the changes that happened to my body in the last couple years from cushings. But now in remission and 3 months post op you can start to see the changes for the better. The reason I decided to show the world these pictures is I am hoping someone can relate and go in and see their doctor. I am now 3 months post op and already on the mend. In remission for the time being and things are getting better again. My body is going back to normal. Will all the stretch marks ever go away ? Probably not. But it will be my badge of courage that will remind me how I fought to get to where I am now. Each day I am getting better. Each day I will continue to retrain my mind to tell myself again how beautiful I am. That the disease is not going to define me or who I am. I am not just beautiful on the inside but the outside too. I will show off who I am and not hide from the world. Its not something everyone can do but I plan on working on it daily.......

You are all beautiful! This disease is not going to define who you are as a person. No matter what remember that I am here for you too. I understand even if its just a little. God does not make trash. I had to tell myself that a lot. He just doesnt! We are of his image...and God is not trash:) He is wonderful, beautiful just like you! This is me slowly getting back to what I looked like before.....but what I have gone through has made me stronger.....wanting to help others so they don't have to suffer as much.

my youngest son and I at onset of cushings

Year before cushings and before I cut off my hair

i will get back to this. Cushings took it from me but I will get it back

After my kids were all born

It took time to get diagnosed and it will take time to heal. I have to give myself that time. Here I am 3 months post op......

If you ever want to talk please feel free to email me at Cushingscountrygirl@gmail.com or come visit our Facebook Group called "cushings!!" I will always respond to you! Hope this was somewhat helpful even if to show you that you are not alone.

A shot in my butt....Adrenal insufficiency is no joke!

Happy Halloween....my first real Adrenal Insufficiency day:( But I learned a lot, let me tell you.

How did it start you might ask? Well I am three months post op and went in to get my blood draws to find out how my cortisol levels were to see if I am still in remission. To do that you have to NOT take your cortisol for 24 hours. Somewhere in my head I thought it was 48 hours. Its not! I have now learned.

So I withheld my cortisol for two days. Went in and got 8 vials of blood draw to check cortisol, Acth, Growth Hormone, Vit D, Thyroid etc... I knew that I would be taking my cortisol right after my blood draw, which I did. While I was there though I was asked if I wanted a flu shot. I thought of course. So I got one of those too.

Four hours later I am feeling really achy. Like I am low but I just assume its the flu shot because sometimes it can give you flu like symptoms. One more hour later and I just am really tired and not feeling well so I go to bed really early.

I wake up in the middle of the night and vomit. I am thinking "seriously I shouldn't of taken the flu shot". What I didn't realize was I was going into Adrenal Insufficiency. I was aching so bad I could barely lift my arms. I was so sick to my stomach. I would take my cortisol and it would come straight back up. I took more to try and keep it down with an anti nauseous pill. Finally my husband realized I was going into Adrenal Insufficiency and said its not the flu. I was getting to the point where I was so confused. I couldn't barely keep my eyes open. Thought I was sleeping 2 hours and he said it was 10 minutes. All I wanted to do was fall into a sleep.  I kept saying stuff I just would never say. I couldn't even open the bathroom door because my hands hurt. We emailed my Endo and he got back to me right away! So great to have a awesome Cushings Endocrinologist who emailed me back on his day off. He said take my sol-coruf shot right now and then 30 mg orally after. Then double my regular dose for three days and take it easy. My husband got straight to grabbing my emergency shot and put it in my thigh/butt area. Within 30 minutes I was starting to feel clearer. My arms started being able to move. I wasn't feeling so tired. But I wasn't all better. So I took the 30mg orally and started to feel better. Most ppl would have to go to the hospital for hydration and also another 100mg. So if this happens to you I would recommend going in. We live so far away I just went off what my Dr said to me. Each case is different though so please go to the hospital.

It was a scary moment for us. We live 45 minutes from the nearest hospital and I am so thankful that I had the shot here in my house. I have heard so many horror stories about this. People going into comas or even dying because they didnt get the shot or get to the hospital. This is no joke!

 Now its the next day and I feel like I have the worst hangover ever. I feel my head throbbing and kinda still a little nauseous but doing WAY better. I do notice also that I am feeling more stressed. I am sure that has to do with all the cortisol running through me. The shot is 100mg. I take 7.5 now a day. So I will be taking it WAY easy to get my body back to normal. I am also taking double my regular dose for three days like my Dr told me too.

So what is the moral of this story? Adrenal Insufficiency is no joke. Don't take it lightly. Look for the signs and symptoms of it and take action. I am lucky. I could of slipped into a coma or not gotten to the hospital in time or not had the shot with me. I am lucky I had my husband there because I started to get really confused. Many ppl are alone and we need to really figure out what are symptoms are. I learned you only do not take your med ONE day before your blood draw not two. Do Not take flu shot when you are withholding cortisol from your body. If you are thinking you need the shot....take it. Don't wait. Too much cortisol wont hurt you but not enough will post op.

Look at some of the signs and symptoms of Adrenal Insufficiency to be able to pay attention to your own body more. Its important. Yesterday I was lucky in so many ways. I want you to really pay attention. I know I will be:)

If you want to contact me please feel free to email me at Cushingscountrygirl@gmail.com or I have a facebook group called "Cushings!!" I will always respond back as soon as I can.

Going to leave you with some pictures of my kids....they still had their Halloween and Football Game with the help of my friends and husband! Thank you so much!!!

my daughter as Jack Skeleton

My youngest as Nypd

Great Tackle from my oldest

My two sons won their football game!

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.