Getting Diagnosed....My Tips

As some of you know getting Diagnosed with Cushing's isn't always the easiest thing. A lot of people struggle with that because Doctors dismiss the symptoms of try and treat them individually. I went to numerous Doctors for years thinking I had hormone problems from my hysterectomy  at a young age of 34. I was treated for weight, treated for anxiety, treated for high blood pressure, treated for hot flashed, treated for bruising etc etc etc. It wasn't until I found a Doctor that told me I think you have Cushing's that I started the road to get treated for them all and not individually. These are my personal tips. I am not a Doctor but this is what I have learned a long the way. If you are reading this you already know or think you have Cushing's so I hope this helps you.

Tips:

• Doctors listen to the first few symptoms first. I personally tell people to start out with the Cushing's Symptoms that you have that are more Cushingoid. For instance if you have weight gain, buffalo hump, moon face, straie, bruising, depressed, and anxiety. You should tell the Doctor first about your buffalo hump, moon face, straie, bruising and leave weight gain and depression to the end. I know most of us say weight gain first or depression but those really should be at the end so the Doctors don't try and treat you for that and don't listen to the rest.
• Bring Before and After pictures to your doctor. Also a food log so you don't get the well you must be eating too much bit. Its helpful for others to see the difference. They don't know what you looked like before. You don't have to be big to have Cushing's either. My good friend Van who has a blog at www.onedelicateheart.blogspot.com isn't a big person at all. She is one of the founders of this blog also. Van is in remission from Cushing's. You can have different symptoms.
• You don't have to have all the symptoms to have Cushing's. I would doubt myself a lot actually because it seemed weird that I would have this disease. One thing my husband said to me was "Name something else that would have all these symptoms and come back to me". I couldn't. Maybe its a good thing to ask your doctor too. Mind you I am in remission now and had two tumors removed. I went through my doubts too though.
• Join groups like Cushings!! on Facebook or search out blogs or sites of others who have experienced this. Learn from them and others. Get the support you need because it is out there.
• If you are struggling with money for medical bills or going to the right doctor contact NORD. National Organization of Rare Diseases. They are an amazing organization who helps so many. They will help pay for your doctor bills, your hotel or flights, MRI etc. until you get Diagnosed. www.http://rarediseases.org/
• There are a lot of websites out there. One of my favorites is www.cushings-help.org which has been around for almost 14 years. It has so much knowledge. My other favorite site is www.cushingstories.com because it has personal stories of those with Cushing's at all different stages. They also have blogs to follow and Videos of Cushies. If you look at some of the stories at the end of that page is also more Videos of that particular person.
• Test....Test....Test.... keep testing. One or two tests that are normal doesn't mean you don't have Cushing's. Have your doctor give you 24 hour urine tests, Saliva's, Midnight Serums of Cortisol, Dex test, Atch tests. Remember most Cushing's patients are up at night and tired in the morning. Our Cortisol is higher at night than a normal person and can be low in the morning hence the Midnight Serums. Test, Test, Test. Don't give up! I had over half normal and half highs because I was cyclical. Check out www.cushingstories.com Facts section on when to test. It could make all the difference.
• A lot of Doctors hear that they will never meet someone who has Cushings that it is too Rare. If you feel you have it please keep seeing Doctors until they test you and do MRI or Scans. Cushing's only gets worse with time. Be your own advocate. There ARE Cushing Specialist Doctors out there. Who will listen to you. If you think you cant afford to go there (NORD can help) just remember that it is worth it to getting to the other side of this. Personally I had to say to myself its worth it to go to a specialist than waste my time and energy and money on endo after endo. Two endos wouldn't even see me because I had a normal test. I went to a Cushing specialist and found my tumor, got diagnosed, had surgery and now am in remission getting better by the day. That was worth it to me!

These are just a few tips from me. There are many more out there but these ones are the ones that were important to me. I hope that it helps. If you ever want to talk to me please feel free to comment or write me personally at 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