5 Things Every Person Living with a Rare Disease Understands

I am really excited to share this article to you all!! It has my good friend, blogger and Co founder of our site Cushingstories.com in it! They feature quotes from the both of us. I am so proud that Novartis is taking the time to really talk about Cushing's and Advocating for it. Rachel and I both have Cushing's and really want ppl to understand it. This is just the beginning! Novartis is making great strides in getting awareness out there for our disease and many other Rare Diseases also. Please check out the article! #RDD2015 #GetLoud #Raredisease #Cushing's

http://www.novartispharmaceuticals.com/en/stories/detail/5-things-every-person-living-with-a-rare-disease-understands

Everyday Rae Rae: Hospital Valentines...Best one Ever

Everyday Rae Rae: Hospital Valentines...Best one Ever: The love day! Valentines Day. Its that time once a year that is dreaded by many or such an exciting day for others. I happen to love Valenti...

MIA....in hospital

Ahhhh the glories of a low immune system;) Been in the hospital now for three days going on four. Remember how I said I got sick Super Bowl Sunday? It hasn't gone away. Yeah! Lucky me .....not. :)

By day 9 Ryan took me to ER and they said I had bronchitis and asthma on top of it. Three breathing treatments later and medicines, inhalers etc we were sent home. Next day even though I had been on antibodies for days I felt worse. Being in remission from Cushings Disease I still have low immune system being only 6 months post op from brain surgery. Everything else is a thousand times better though. For that I am so terribly grateful! The sickness part though seems to go on and on for me. End up having to stress dose cortisol (since now it's my friend not my enemy) because sickness eats it up.

I thought I would get better but I just couldn't breathe. Coughing so much and so hard I would vomit. Had to breathe really shallow and talk low to not cough. Felt extremely dizzy and not hungry at all. We ended up going back to the ER mid day since my MD was out of town this week.  They admitted me into the hospital within 40 minutes. I have been here since.....laying in my hospital bed under that ugly pink blanket ha!

Good news is I am getting better. I am so pumped full of steroids right now. 160 mg cortisol daily. Breathing treatments every hour on the hour and some even in between, antibodies and fluids. Now on day three here I am feeling better even more so and have breathing treatments every two hours. I look a wreck but the only time I am up is to go to the bathroom or shower or I am short of breathe.

Something I learned is when you have Cushings that cortisol masks some things like auto immune problems or asthma etc bec the cortisol is naturally so high from the tumor that you just don't know it. So in remission I am finding out I have asthma.....maybe always have had it but it was masked. Well guys......bronchitis and asthma don't mix.....at all. Just trust me on this one haha.

We are on day 12 of being sick I really am feeling bad. Not health wise but bad that my family is having to keep on keeping on without me. I am very lucky to have the husband I have. He is so generous and kind in all ways and knows that this of course is out of my control. He always asks me "well if it were me in your place what would you do?". I would do anything I could of course but I definitely think I would be way more cranky than he is ha! We really lucked out too bec the day I got admitted Grandma Sally (Ryan's mom and my awesome MIL) was coming up to stay with us. It never ceases to amaze me how she just jumps right in and helps and doesn't gripe about it. With my mom in heaven it really makes me think that she somehow has a touch in her that helps Sally to be there for us when we really need it.....along with the fact she would just do it anyways. My mom would always come to the rescue like that. Anything for me or her grand kids....she would make sure that they were being taken care of so Ryan could help take care of me. Ryan and I are both blessed to have those type of ppl in our lives. I may not have my mom but I do have my second mom Sally. Fiesty and Fun.....just like my mom was. Okay seriously now I am crying lol. I will just say that's from only having 3.5 hours of sleep in 3 days ( gotta love that cortisol....not).

I am really hoping to be home tomorrow but if not tomorrow I pray I am not here on valentines day.  Even though no matter where I am I will feel loved by family and friends. I am typing on my I Pad so I don't think I can add pictures to my blog or you would see the beautiful flowers and cards and books I have received. Yesterday I was so taken back because someone I know through Facebook who is a friend of a friend but retired teacher at our kids school came by and gave me flowers, candy, a beautiful chicken soup for soul book ( she doesn't know this but it had special meaning to me because my mom was published in one) and a book to keep me busy. It was beyond sweet. I wanted her to be able to sit and chat but I would start coughing as soon as I talked so that will have to wait for another day.

Then.....in walks in my husband and daughter couple hours later. Man I have to figure out how to add pictures. I seriously almost cried. They looked like they were moving in lol. They brought me a late lunch and flowers, my coveted grapes and orange juice, coffee and then MY P UPPY MOLLY!!!!!!! Ryan had called ahead and asked and begged and they said yes for a little bit. Mind you Molly is only 2 pound Shih Tzu that doesn't shed. She was so happy to see me and I her. To me that was one of the most romantic gestures because it was so thoughtful.....a surprise ....and effort was put into it. Seriously I will always remember that....! I had a great visit with them but I knew they would have to go and pick up and drop off the boys for basketball soon.  I am really blessed to have such a good family.

Right as they were leaving I got a delivery. I was really feeling loved. It helped too because the fact that I can't sleep on all this cortisol they are pumping into me I am here a lot by myself. My husband wants to be here more but it's 1 hour drive just to get here and then one back. Plus I really want our household to keep going because our kids are so busy. He constantly is telling me he feels bad bec I tell him to not come back. It makes me feel better that Sally and him can get everything done at home. He just ends up texting me right when he wakes up till he goes to sleep anyways. Lol. Anyways back to my delivery......omg they were the most beautiful flowers!!! As soon as I saw the card I knew who they were from when the front of it said "Farmer Rae" lol. That's a nickname a couple of my friends call me because when I first moved to the ranch I kept collecting all these bottle fed animals......calves.....lambs.....puppies lol.....it's a big joke that they think I need a skunk now or a giraffe. These two friends are always giving me such strength I don't even think they know how much strength they give me. I am very thankful for our families friendship.

So I may be in the hospital.....I may not be sleeping.... But I know I am loved. Not because I am here but because that's how I feel daily.  I am hoping tomorrow I will be outta here because I am pretty bored. Ok extremely bored but I will stay till I am well.

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.