Update Fully Tapered Off Steroids (PICS) and MORE!

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 tips and tricks and also my 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

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My Sister and I were Diagnosed With Cushing's: MALE Cushing's patient

Meet Gabriel

The year was 2007 I was age 16 I woke up like any other day went and played some games with my friends. That night, something happened. It began with a small pain in my side that grew stronger and stronger we went to the hospital thinking it was appendicitis. It wasn't after a few tests and the pain not going away they (doctors) were stumped as to what it was. I stayed in the hospital for about three weeks getting tests done and nothing was found the pain stayed the only thing that was wrong was my level of cortisol was slightly elevated.  A few months went by and many doctor visits later nothing was concluded. Doctors were doing random strange tests and nothing. One doctor wanted to start treating me for Addison’s disease which is the opposite for Cushings but they were on the right tracks. About a year went by and test after test being negative I was diagnosed with Fibromyalgia my body was exhausted and my mind was numb. After a year of testing to be told nothing's wrong really made me sick. But like always, I moved on from it. I rolled with it and I was treated for fibromyalgia with the help of sleep aid and the knowledge of certain things that can trigger intense pain episodes.  Around the year of 2009 my sister was diagnosed with a brain aneurism and had surgery. The doctors who were doing her tests noticed a small link between mine and her results .She recovered from her surgery. And began seeing an endocrinologist after a few months of testing she was diagnosed with Cushings. During this time of her surgery and testings I was trying to finish highschool and start college. The year was now 2011 I was living my life with fybromyalgia but I began getting sick I remember having an adrenaline rush and nearly passing out because of it something wasn't right we were for sure of it. I began seeing my primary doctor letting him know what was happening. I had weight gain, low immune system, blackouts and pain. The doctor’s response was I was depressed. Cool story right.

I sucked it up and dealt with it for another year. My sister was diagnosed with Cushing’s and my parents noticed we had similar symptoms and started and put two and two together. I made an appointment with my sister’s endocrinologist and she noticed right away that something was wrong. For me, I felt joy that someone was going to help. She noticed the straie on my neck and underarms and jotted down my symptoms which included bone pain, muscle weakness, excessive urination, thirst, fatigue, headaches, thin skin,  and bruising. I was text book Cushing’s.  They immediately started testing me for Cushing’s. My first urine test was the worst they have ever seen. My cortisol was sky high at a level over 70. Other family complications that happened through the year put my treatment on hold. Meanwhile my sister was able to participate in a cushings study with a medication that was new to the market called Signifor, it was a daily injection that had the chances of shrinking and stopping the growth of the tumor. After a year, her results were great; she lost weight and looked healthy. I began going back to the doctor and had more testing. My cortisol was really high around 60s. The levels made my body constantly tired and sent my body into over drive. I did an MRI and Dxa scan. They stuck a tube into my brain to see where the leak on the pituitary is. 3 months later my results came back and the conclusion reached was that I had Cushings Disease. I had multiple tumors but none were visible. That was why my body was shooting out cortisol. My life flashed before my eyes. Years and years of waiting, crying, and testing I finally had my answer. I got into the case study for CD.

 I was the only guy in my state to be diagnosed with CD at the age of 22 and my sister 19. We were the talk of the town. Unfortunately testing requirements were very complicated and I decided not to do the study and instead go for the medications. It took a few months to get the medications since they were new and pricey. It was okay to wait since I’ve been waiting for years. After 7 weeks I got my first order of Signifor. I began taking the injections. The first injection made me vomit and I continued to vomit after for two weeks. One morning I woke up smiling, I no longer felt a lot pain in my body and my mind felt clear.  I was on the road to recovery. After 2 months of taking the medication I feel great. My mind is right; I still have pain for fibromyalgia. I had my first adrenaline rush and didn’t pass out. My mental status is good I have always stayed positive despite what has happened. I keep my mind away from the depression. Now life is falling into place. The next thing I need to worry about is what to do in life without wondering if tomorrow will be my last day on this earth.

Cushing's Awareness Day

So I am a newbie here. I didn't know that April was the month to write a post everyday for 30 days for Cushing's awareness. I am 8 days late but I will try to catch up. Who's counting eh? Lets talk about symptoms and progress. Oh yeah thanks Marian for updating me on this!!

It's been almost 10 months since my adrenalectomy. Symptoms I still have is rapid heartbeat for certain things. Food can trigger it, high activity, social anxiety and caffeine. It's not as bad as before but it still happens maybe 2 or 3 times a week. No more panic attacks! YAY! No more paranoid feelings when I am out. The depression is much better. I find myself enjoying life more. I am socializing again and doing more of my hobbies. My menses come once every two months. I am getting more tired lately and extra unmotivated to get things done. I don't know if it is related but before I could multitask and wake up early but now it feels impossible to get out of bed. My memory is getting pretty crappy. The short term memory is bad. I repeat things and lose things that are right in front of me. Everyday is a struggle. Can't remember what I am studying and my textbook is a puzzle to me. I will be getting a brain MRI in a week to figure out why I am having headaches every night and the memory problems. THE STRUGGLE IS REALLLL lol hmmm.. weight is still stable. I am eating lots of fast food, takeout and restaurants. I have mad sugar cravings. Still get faint often.. The nurse says I have low blood pressure so i guess that's why I will eat a cookie then crave another piece of chocolate. SIGH I hope this won't make me gain weight once my hormones regulate.. I have absolutely no motivation to eat healthy and go workout or be productive versus before surgery I was working, going to school, eating super healthy and working out. Now I have to find great effort to do simple things. My bones still hurt, I tried to squat and heard my knees crack and pop and it hasnt stopped cracking ever since so I guess no squats for me. lol I will probably get a fat ass from eating all these carbs i'm inhaling anyway. The hairy-ness is sooo much better. This guy in my class said he hates hairy arms and asked to look at mines and said I had nice hairless arms. HA! He should have seen me a year ago. I was a furry hamster... But yeah I shaved my whole body and the hair growth is much thinner and almost blonde so that is very good progress. The acne is better as you saw in my last video.. But I still get pimples here and there so I still feel paranoid about that. The hair on my head is filling up nicely. Just got a fresh cut and now my hair feels so soft! Okay there's so more stuff but I don't remember so I will post a better blog next time. I am a little distracted right now =] Here's some pics of my haircut and progress pic!

Loving this hair. I did not change my color this is a box color from walgreens =]

Recovery is a beautiful roller coaster. Hello dimple, never thought I would see you again.

LIQUID GOLD 4 CUSHIES!

Hello Cushies! If you guys are going through recovery, preparing to operate, or just super dry skinned. I found the holy grail lotion!

During my first month of recovery, I was not prepared about getting the itchy dry skin. I read all Cushies have the terrible itchy dry skin all over but of course I didn't think it would be that bad. Then one night I woke up in the middle of night and was so itchy I kept scratching myself and it did not help the burning sensation, if anything scratching irritated it more. I could not sleep and was so upset it felt like a allergic reaction. The next morning I looked and noticed I had patches of scaly stuff on the tops of my arm and the side of my backs. In time it got worse I noticed a strange texture to my skin almost like bumpy chicken skin. I researched what was going on with me and it seems like this is a common problem during recovery. So I started putting lotion on my skin and it seemed to help the itching however the lotion seemed to just sit on top of my scaly dry skin. So I tried different lotions but none of them seemed to penetrate deep in the skin for lasting relief. Then I just tried some lotions that were very thick and felt sticky all the time.

That was until I discovered Borage Therapy Lotion. OMG this is my holy grail lotion. I am so excited about it. I have to share the liquid gold. This lotion is the best lotion i've ever used. It absorbs quickly, penetrates deep layers in the skin, not sticky, fragrance free and gets rid of the dry scaly goose bumpy skin. It has a yellow color to it and a nice texture The smell kind of reminds me of cooked oatmeal. It does have oatmeal and borage oil as the main ingredients I think. Disclaimer: pleas check ingredients to see if you are sensitive or allergic to ingredients!
 I got this one at vitaminshoppe in store. but they sell it on amazon for bulk packs and individual. This one was 12.99 but I used a coupon for half off. I would still pay full price for this stuff. My muffin recently complimented how smooth my skin was and kept touching my arms haha I love it!

liquid GOLD!

My Battle with Depression, Suicide & Stuck Up Betches

I've been fighting with depression for a very long time. In the past as a young child, I was bullied for my weight. Everyone called me fat and ugly in elementary school. My family was not too well off so I didn't have nice materialistic things so I was bullied for that too. It doesn't help to have vain, judgmental, abusive people around while growing up either. (not my parents) of course.With all of that being said I am growing into a woman of my own and do not call myself victim to these experiences however they do make me more predispose to the likelihood of being depressed.

Chubs

Life in general felt rough to me. I had no one to tell me what was right and wrong and usually I would make the "wrong" choices. I did lose weight when I got to middle school and found a bit more self esteem and made some friends. Still, I felt awkward and I was not comfortable in my own skin. When Highschool rolled around I blossomed into a young lady and shedded the awkward phase. Not to say my blonde phase wasn't awkward! lol anways, I joined rotc, sports, cheerleading, and extra curriculars to validate that I was accepted socially. I did pageants and other stuff on the side to feel more beautiful. All those things did temporarily void my emptiness however when it was over, so was my little life. Then I would go on to find other things to temporarily fix the void. Deep down I was still the scared little fat kid.

In the beginning of University I made a lot of new friends and partied a little too hard. Which is OK because we all go through that phase and nobody can judge us for wanting to have fun and enjoy life. However I lost sight of who I was. I put away the scared fat kid to become another persona which everyone seemed to enjoy. But those days I have to say that I didn't like what I was becoming. I was hanging out with bullies. The people who inflicted pain in me when I was young were now the people I called friends. I hated them but mostly I just hated myself... I drank & smoked the pain away. Finally reality hit me that I don't want to be that way anymore. I stopped seeing these certain people (not all) and decided its time for some soul searching. I never felt more depressed and alone at that point. I chalked all those sad emotions up to my losses. But something deeper was hurting.

A year later I was hurting inside. I hurt so much that I stopped going out at all. I stopped seeing family members who put me down and I stopped self medicating. I was going insane with my anxiety that was growing so strong. I was paranoid and felt like I had a demon inside of me. I began to look in the mirror to see a face I didn't recognize. My face was getting swollen, cushinoid, acne all over down to my neck. I stopped getting a period and stopped feeling like I was a woman. I felt like a monster. I had intense feelings of mood swings and did not know why. I felt more depressed, anxious, and rapid heartbeat. I was so fatigued. I saw it in my eyes. I blamed myself for becoming that way. I must have been a terrible person to deserve this. Family & others shamed me for looking that way. Nobody was supportive or there for me. I will never forget the day this irrelevant person called me fat in front of my boyfriend and laughed in my face. You had your chance to make it right with me, and you haven't. I forgive you, but I will never forget what you did to me. Because of you, I started having suicidal thoughts. It's not because they called me fat. It's the fact that someone had that much hate at me to say that to my face in front of other people then laugh about it when nobody asked for their opinion. But whatever happened was in a way a good thing. Atleast it helped me hit rock bottom.. Well, I was already at rockbottom before that. That was just kicking someone when they are down.

                  This was my pain, please do NOT attempt. If you are having thoughts of hurting yourself or others, please contact immediate help or hotline!!

Everyone has inner pain, and inner demons they fight. Most people can hide it from the things they do everyday but whatever that was happening to me was about to come out. I was falling apart. One night I started getting panic attacks. It was the worst feeling ever. The next time I had a panic attack I decided I DO NOT WANT TO LIVE ANYMORE. I took a lot of sleeping pills and walked out to the third floor balcony. I said a prayer to God, "please forgive me but I can't live my life feeling this way anylonger" and sat on the railing of the balcony ready to end the pain. Luckily Muffin saw me and held on to me. My second attempt was when I started cutting. I made a cut for each pain I felt. Then Muffin caught me and told me I needed to see someone to figure out what was wrong with me. I told him I hated myself and my life and he said, "listen to me, you are not yourself this past year, you are a good person, you're not yourself and we will figure it out." I thank him everyday for telling me I needed to find help and it wasn't me. When I finally went through the months of diagnosing Cushing's things were not easy but it made me feel so much better that I had an answer to why I felt that way.

After surgery I expected to feel better immediately but instead I felt worse. Due to extreme low levels I was getting even more depressed and anxiety. But it was different this time. It was intense and I had crazy CRAY CRAY thoughts. Anyways I decided to seek help of other patients and hear their story and most people are the same as in "be prepared for the long recovery". I will say the sadness took a turn at month 5. The feelings became less intense. I felt more at ease. The little things don't bother me anymore. I smile more than have strange negative thoughts. Then two weeks ago from today, I felt REALLY good. I can't explain it. Sure, I'm probably still more prone to moods than a normal person but that's okay. Atleast I am on my way to brighter days. I am not "there" yet most definitely. Here's my advice for depressed person or Cushies before, during, after: Get a psychologist, get meds from a psychiatrist, talk to a counselor. Seek advice from other patients including ME! I would love to answer any questions you have. IT DOES NOT HAVE TO BE THIS WAY. I am not myself yet but I am getting close to an even better version! I'm so glad I did not give into the darkness and there is better things to come. I want to thank all of the people who gave me advice that I will feel better in time. You guys were right!

I wish I could tell my old self that I am good enough as I am. Everything will be alright. Just be yourself and everything else will follow. I'm thankful to have been through the sadness because now, I have room for happiness. I've been slowly peeling back the layers or false belief and pain and revealing the wonderful thing that we all are. Perfectly imperfect Purrrfection!

Happy New Year! Happy New You! and My Instagram!

Destroy What Destroys You.
 

Just posting a quick motivational photo for the new years. Recovery journey is starting to take a big turn and  it feels real good to me. I want to do a post about my experience of falling out of depression, so probably next blog will be about that. And no it's not because of the physical changes that is making me happier.... It's mentally too. It's amazing how things can change when I've felt so stuck in a rut for many years. Anyways I'll save all of that for next post!

Any who so I joined two social networking! One is called "Experience Project"-- if you feel depressed, like you need someone to talk to and nobody is there for you, go join this website! You can find people who are going through similar things that you are going through and seek advice.. Or just to talk to. NO HATERS ALLOWED! So try it out!! and I also joined Instagram. Sure I don't have many followers but I just wanted to have a place where I can post up some motivational stuff and progress pictures! I already have some Cushie friends that are seeking advice and seeing the progress of other fellow Cushies... If you have an account for either social networking sites, join us & add me!! See you in 2014!

INSTAGRAM: MEOMEEOOW
ExperienceProject: Yoshigirl12

My Picture Timeline on Youtube

Hello! I decided it's time to put up some pictures of my progress.. I want to talk more about Cushing's, my experience, and support through videos but I'm a bit still shy so I decided to make a slideshow instead... I'm not a pro and some of the captions don't show up idk how to fix it loll I'm a newb but here it is:

Please share this video!

You're Finally here! I've Been Waiting For you...

Finally Aunt Flow came to visit!! Yes I am telling the world! After years of long distance relationship she decided to come for a surprise visit. This is too soon to tell if it's a rogue period so I will wait and see if it will start to come monthly again. But I am happy! It's funny how most chicks take their period for granted because it is a monthly annoyance but any former Cushie gets so excited for theirs. We gotta remember that our periods are a signal of fertility and health. Sure back then I liked having less but it was a huge red flag that something was really wrong. I told my family that I would throw a period party and everyone has to wear red lol but I think I will wait for the next one just to make sure I am not jumping the gun. Plus I am feeling soooooooo tired. let me explain...

 

 

 So lately I've been feeling all sorts of  "hormonal" which is just a nice way of saying I'm feeling crazed and dazed. Well for one, I was starting to try to taper down a bit after feeling somewhat okay these past few weeks and after a few days of tapering down the steroids. I started feeling extremely low and dizzy. I literally felt like crying every waking moment and I was overwhelmed everywhere I went and everthing I did. I couldn't understand why... I got that summertime sadness...Then a few days ago my boyfriend said that I've been really acting off and he started to question if I have been trying to taper down myself again. So I admitted yes I have been for a week now and basically I got scolded for tapering down without the doctors consent and now I am back up again... I have to agree that Muffin was right about this one. I feel MUCH better on a higher dose. This is hard because after years of my adrenal gland tumor producing way too much steroids, even taking the physiological dose is scary to think about. I heard many people get pseudo Cushing's even on a low dose for a long period of time so of course any Cushing's patient would not like that idea... But anyways I think I'll be okay with this higher dose now. I just need to let my body do it's thing.. My thought process is still strange since I truly believe that if I go on the lowest dose I can deal with, that my lazy lefty will feel challenged and start working again but I have learned this is not a good idea the many times I've tried to taper down. Anyways, I guess doctors and loved ones knows best.. This week I have been so sore and achy. I have been having  many digestive problems ever since the surgery and I am feeling tired. I woke up at 3pm today... My feet feels swollen again and my lady lumps are crazy swollen too I cant sleep but I guess that's what happens during this time of the month. It just feels magnified. But you know what? I'll take any of this pain if that means it's part of me recovering. Thank you Aunt Flo!

 

                                        ^ I think she's singing about her period

Endocrine Article Abstract: Improving concept of recovery in endocrine disease by consideration of psychosocial issues

Improving the Concept of Recovery in Endocrine

Disease by Consideration of Psychosocial Issues
 Nicoletta Sonino and Giovanni A. Fava

Stringent criteria have been established to define remission

by hormone parameters in several endocrine disorders.

An example is provided by the criteria for cure of

acromegaly (1). However, it is clear that such criteria are
far from being comprehensive of a patient status, and often there is a need for filling a gap between the “hard data” of
laboratory results and imaging findings on one hand, and the “soft information” related to the patient presentation
and complaints on the other hand. Indeed, long-standing
endocrine disorders may imply a degree of irreversibility
of the pathological process and induce highly individualized affective responses based 
 Hormone replacement may not fully restore optimal
endocrine balance, and subtle dysfunctions may still exert
their influence on psychological states.

When surgery is performed

the patient is likely to have expectations of a
quick recovery toward his/her former normal condition.
Unrealistic hopes of “cure” may foster discouragement

and apathy.

Harvey Cushing himself had acknowledged

the difficult recovery of patients suffering from pituitary
disease: “It is even more common for a physician or surgeon
to eradicate or otherwise treat the obvious focus of
disease, with more or less success, and to leave the mushroom
of psychic deviations to vex and confuse the patient
for long afterwards, if not actually to imbalance him” (5).

Currently, however, the average endocrinologist is still

unfamiliar with the psychosocial aspects of patient care,
both in terms of personal skills and organizational structure,
and lacks an adequate background for facilitating the
process of recovery.
 

Indeed, the definition of recovery

in endocrine disease should not be limited to
normalization of hormonal values, but should be broadened
to the psychosocial status and functioning of
the patient.
 Patients have become more aware of these
ssues and their difficulties in coping with endocrine
illness, and its often severe psychological consequences
have led to the development of several patients’
associations.

The psychosocial impairment that is associated with

incomplete remission from endocrine illness requires
novel modalities of clinical interventions, as we outlined
by introducing the concept of rehabilitation in
endocrinology (7), to allow patients to progress toward
an optimized state of health. Rehabilitation in endocrinology
may be indicated in the following cases: 1) delayed
recovery after appropriate treatment; 2) discrepancy
between endocrine status and current functioning;
3) presence of a decline in physical and social functioning;
4) persistence of important comorbidity, with special
reference to psychiatric disturbances; 5) abnormal
illness behavior; 6) problems with lifestyle and risk behavior;
and 7) potential role of stress in endocrine disturbances.
An endocrine rehabilitation team should ideally

include a trained clinical endocrinologist, a physical

therapist, and a psychologist, with opportunities for
other specialist consultations. The role of the psychologist
would be essential for a more precise definition of
the patient’s psychological symptoms, for understanding
coping difficulties, for modifying risk behaviors,
and for offering advice and support to spouses and family
members of patients undergoing the various phases
of illness. The goal of multidisciplinary approaches
would be to ensure education, support, and specific interventions,
helping the patient and his/her family to achieve optimal coping with the difficulties of the recovery
process (7, 8).
 
^^Yes I agree 100% of this article. Not only do hormone values need to be evaluated but also psychosocial status too and a rehab team is a must!

Recovery

The first thing I am being asked these days is how I'm feeling. First thing I want to say is that I feel grateful to have gotten the tumor out and to be living and breathing. Second thing is... I feel like crap and recovery sucks. I'm sorry to disappoint those who are waiting for me to get better so we can catch up and enjoy our lives together but this process may take a while... I feel the same but worse. The Cushing's syndrome is gone but that doesn't mean that I am back to my normal self. Not yet atleast. I still have to deal with the aftermath of what this illness has done to my body and mind throughout the years that I've been living with it. As you can see my headline use to say "from diagnosis to recovery", but I now added "cure". Silly me for thinking being in recovery is the same as being cured.  They are two very different things and I am no where near being or feeling cured. Being cured I would say is when my remaining adrenal glad wakes up and starts producing the hormones it should then sends the message to my pituitary gland to balance more hormones so I can function normally physically and mentally. Mainly cortisol is what my body needs.  Funny how it created so much problems and imbalances in my body --got rid of it, but now I am struggling to get some of it back in order to function and live. I am barely learning what this recovery process really is.

Okay so how am I really feeling? Like a punching bag. I feel as if I still have Cushing's with all the symptoms but magnified. Now that I don't have cortisol, I don't have any anti-inflammation help so I feel every ache and pain in my body. To top things off I don't know if it's because of the chemical imbalances in my brain or the medication i'm taking but I am experiencing extremely poor memory, concentration and confusion. I am struggling to write this post I keep looking back to reread because I forgot what the previous sentence I wrote is about. I find myself standing around forgetting what I was going to do, blanking out, fumbling and switching words during conversation, and last night thinking the my phone was the remote. lol that is funny but not really when the forgetful person is you. You know the feeling of struggling to look for your keys before leaving the house, you look everywhere and in the end it was in your pocket or on the countertop.. Well that is how I feel all day lol. The alarming thing is that it is appearing to gradually get worse ever since the surgery. I seem to not comprehend anything people are saying and my short term memory is terrible so forgive me if this entry sounds repetitive or not make sense. I see muffin laughing at the tv but I just feel confused because I can't follow the plot. I asked him to rate my cognitive functions from when we first met and he told me I use to be so sharp and was a 10 and now I am a 6!! I need to start playing suduko and crosswords!! When I wake up, as one of my cushie friend describes is feeling like I am waking up from the dead no joke. My limbs are aching and I had no idea I had arm pains until now. I am so itchy from the dry skin and my hair is falling out double the amount. I've been writing down all of my symptoms and concerns on a note pad and talked to my docs. They say it's all normal and its usual symptoms of cortisol withdrawal. I have not experienced the vomiting and shakes but that is probably because I am on 30 mg of hydrocortisone daily. My body is not accustomed to that less of an amount but it will and gradually I will have to work with my docs to slowly taper off the meds each month until lefty wakes up. which could take up to a year. I wanted to try to taper off the meds myself but I read horror stories of adrenal insufficiency or crisis where the women end up in the ER. I do not want to end up back there! Another girl I talked to said she self tapered and was about to pass out before her roomate found her. I may be stubborn and like to self experiment but I do not want to go back to hospital so I will take my meds at correct doses and time =]. I just hope I don't forget!

I also made a list of the good things. The moonface has been shrinking, I'll post up some before and after pics soon. My family members say I am more upbeat. And I have been sleeping ALOT. I can literally close my eyes and take a nap right now. I feel less bloated from not retaining salt. I've lost 5 lbs of like water weight I was retaining and my appetite is feeling normal again. my shoes are loose on me again. My surgeon said my wounds are healing slowly from the surgery but that is expected from cushing's, still they are healing. This recovery process is tricky, my doc says the symptoms of cushings is a lot like the recovery symptoms. I understand why people say it is slow and frustrating.. I also experience chills at night and shooting muscle pains. I also feel my allergies again. Which is a good thing to feel right?

To those of you who want to see me, I'm sorry I cannot be the friend, sister, cousin, daughter, niece I can be right now. As much as I try to push, I cannot physically and mentally make my body recover any faster than it wants. I need to learn that patience is required throughout this whole process. There is no shortcut in looking and feeling healthy. Everyday I am relearning what my body is telling me. Actually i'm learning how to live life again. Mostly I just feel confused but I am trying my best... I use to feel so betrayed by my body but now I need to listen to it. I have nightmares every night about Cushing's returning and fear I will forever be broken. I fear the most that the anxiety, depression, and panic attacks will come back. I want to make sure they are gone for good and never return. I know right now a lot of things are out of whack and that's why I feel the way I do and the prolonged recovery adds to the frustration. But now when I wake, I know things can only get better day by day. I texted my surgeon to thank him for fixing me and he responded "it will take some time and adjusting but rest assured you are fixed-- do everything to remember you are fixed now."

Update: adrenalectomy surgery

Last Sunday I got the best phone call of my life. It was the specialist surgeon but I kept getting dropped calls so I ran my booty off downstairs outside barefoot and finally got signal, the doctor told me that they had an opening in the schedule for an operation and he asked if I wanted to get my surgery done the next morning and of course I said YES! My boyfriend said he hasn't seen me run and jump in months loll. I was expecting to wait another few weeks for it but god answered my prayers and miracles happen. So we packed all of our stuff, dropped off the dogs, had final meal and prepped to go to the hospital. They wanted us there at 4am so there wasn't much time for anything I couldn't sleep I was so nervous. Let me say that I was not prepared physically and mentally for what was to come next..

waiting for operation

When we got to hospital there was a lot of confusion since my surgery was a change in the schedule, I never had a consultation with the surgery team. Everything went by fast the nurse just told me to dress in the surgical gown and pee in a cup. Then I went to the Prep room where I had like a five minute consult with the surgeon. he's a cool guy who got most of his experiences in Australia and has done over 50 adrenal type surgeries around the world and he fell in love with that type of surgeries lol so I felt like I was In good hands. Once he left, literally 10 different doctors stopped by and made me sign my life away they went over the risks and complications and it was some scary stuff like "you might remember everything during surgery even with anesthesia and will have to go to therapy after but sign here" "you might run out of blood and need a blood transfusion and get hepatitis or aids but sign here" oh lord the anxiety was through the roof! but I just wanted to get that crazy tumor out so I signed everything.. Then muffin came in and held my hand while the anesthesiologist made me a a very strong cocktail, It just seemed like everything was melting then they rolled me out and all can remember was the doctors asking if I was ready to party with them before passing out lol. When I woke up in recovery random people kept coming in telling me stuff I can't remember but all I know was that instead of 3 incisions they had to do 4 because they had to flip my liver to get to the right adrenal gland. I was intensive care for 7 hours. I remember feeling cold wet stuff coming out and the nurse having to keep wiping blood I was leaking from my right arm catheter.  Finally got out of recovery and moved to a room where they hooked me up to multiple machines to monitor me that night. There was a lot of beeping noises that started to sound like a remix and the nurse telling me my heart rate is too low supposedly it got down to 37 bpm. Then every 3 hours that night the nurse came to check my heartrate, blood pressure, blood sugar, give morphine etc and take blood. omg I cannot handle getting blood drawn every few hours it was horrific. I think I got blood taken out at least 20 times last week. Then they told us that my blood sugar was too low and I had to drink pints of apple juice and eat jello the rest of the night which isn't that bad since I love jello lol. Atleast I know the surgery was successful because my heartrate, bloodpressure and bloodsugar use to be really high and now its reversed. Muffin was suppose to leave after visiting hours but the nurses said they'll pretend he's not there lol. I had absolutely no sleep that night.

my IV buddy & Usher loll

E.T.

Muffin

The next morning several doctors came to talk to me again repeated everything what I couldn't remember but to tell me about the extra incision and tell me that they gave me mega doses of steroids for the surgery so once it wears off I will feel the pain. Then the endocrinologist team came to tell me that the surgery was successful because I am no longer making any cortisol or hormones and my left adrenal glad shrank and is "asleep" so I will need to be on medication until it wakes up. Then they told me that I will have symptoms of cortisol withdrawal that will be very bad similar to a heroin addict withdrawing from the drugs. So basically for the next two weeks, I will feel like crap and have dizziness, fatigue, hot and cold sweats, shakes, nausea plus the cushing's symptoms but will feel a bit better as time goes by. They told me I won't feel normal again until my left adrenal gland wakes up and starts producing hormones again which could take up to 6-12 months and to expect a very slow recovery. They also pressed on that I do not ever want to miss a dose of meds or else I could end up In the ER and I can't be stressed out because my body can't handle it and I have to double dose or "stress dose" in stressful situations. wow so much things to expect now that I am recovering, but as long as I can kiss Cushing's goodbye, I will survive.

So that day my family came to see me and my little brother wrote me the sweetest card "I love you Vam" loll  then my aunts came to visit and share their scary experiences of giving birth to make me feel better. Muffin's family also visited and his little sister cheered me up. I was expected to be released in a few hours but then I started getting sharp pains down there when I went #1 and the nurses thought I had UTI so they took more blood and other tests. (warning this may be TMI for some people) We waited a few hours and tests came back negative but now the pain was excruciating and I had to pee every 10 mins. It went on all day, finally the nurses did a bladder scan and turned out my urethra was irritated from the folie catheter they stuck inside me during the surgery and so my bladder won't release the urine and I was retaining pee that was good for (atleast 3 pisses lol.) It got so bad to the point I couldn't go anymore and the nurses told me I need a "straight cath" I'm thinkin WTH is that?! OMG google it.... it is the most traumatic thing I have ever done. Worse than the surgery itself... anyways I don't want to get into detail with that but they basically told me I can't leave until I can pee pee myself and not retain any urine. Sighhh so they moved us to another room. all day and night, every time I peed I had to report back to the nurse who would do bladder scan to see if there's improvement. It was so painful and annoying because I needed to pee every 20 mins and had to get up and deal with surgical pain and all these machines hooked to me and drag my IV and monitor to the restroom lol then that night once me and muffin got all comfy on the bed to watch our show online, the new nurse came in and yelled " visiting hours are over!! How did you sneak in?! NO BOYS ALLOWED!!! You leave now now NOWWW!!!" loll she made us kiss goodbye then he had to leave.... :( that night was the hardest because I had to get up and drag all the machines with me. I was scared, the lady I was sharing a room with was bed ridden and had to poo in a dish and the smell circulated the room I wanted to pass out... then she had nightmares and kept repeating "god lord jesus don't let the devil get me" all night long.... The next morning Muffin came back and so did my aunts to check up on me and shared more scary stories of them giving birth lol. Then the nurse allowed muffin to take me downstairs in a wheel chair to the café for lunch. I decided I wanted to walk but got so dizzy so had to be wheeled around that day. I was hoping to be released that day but My bladder was still not emptying completely so they kept me another night. Damn it bladder, you failed me again... So that day more painful pees, another straight cath and more blood being drawn. I had no appetite but that didn't stop muffin from eating all the hospital food lol. Then my surgeon came to tell me that he's not letting me go home until I can pass gas I laughed but he was dead serious...That night my sister spent the night and got to experience the horror from my bed ridden roommate haha. the next day the final dramatic bladder scan revealed my bladder was functioning again and as soon as they drew blood and everything looks fine, I can go home woohoo! Idk whether it was the steroids, surgery, tests, scans, straight cath, no sleep since surgery, scary roommate or what but when the guy came in for the final blood draw, I freaked out and I screamed and cried and said I just want to go home! I think it was the final straw I was acting all loopy bonkers and they all had to calm me down. Then I took some vicodon, fell asleep for an hour, and woke up to the nurse saying, "you can go home sweetie!" we all jumped for joy! Thank goodness!

Our little corner

yummy hospital food

to: Vam lol

^ cute <3

I bruise easily so be gentle... 

On the way home, I feel tired, cruddy, and stinky but different. A good different. The hard part is over and now I can start the recovery process of becoming myself again. I have to say that I was not at all prepared for that crazy surgery and long week in the hospital but I am so glad that I got through it and this whole experience from finding out about the tumor till now has taught me so much and how to stay strong. From what the doctors and recovered patient's say, the recovery is slow and will suck. Expect months for things to significantly change and symptoms to reverse... but that's okay, the worst is over. I just want to thank all for being there to support me family, friends, all the doctors and nurses. I thank God for answering my prayers and especially to my angel Mrs. Angie, Thankyou so much.