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.

Patience and support

Well another week of not feeling alive but merely waiting. On Wednesday we went to see the doctors at the endocrinology clinic. My endo referred me to them to help expedite the surgery. When we got there, many doctors came into the room and examined me like I was a new species or alien lol. They kept coming in and out and told me it's rare for them to see an adrenal tumor cushing's patient and each one of them asked if they can examine me. I found it amusing so I let them poke and pinch me. This one lady kept pinching my cheeks haha. She told me "remember the depression you're feeling is not you but the cushing's, keep that perspective!" The good news is they will request for urgent surgery. The bad news is there is only one specialist endocrine surgeon on staff who was not there so they are referring me to go see him sometime next week. They also ordered more tests. Sighh more Lab testing and waiting... At this point I just feel like i'm at the end of the race but I cannot get enough steam to pass the finish line.

Then I was looking at the Cushing's book they gave me and all the symptoms listed I'm going to rate the symptoms (1-10) of what i'm experiencing:

• Fatigue -9 (hell yeah)
• Muscle weakness -7
• Depression -6
• Anxiety -10 (yup)
• irritability -7
• Loss of emotional control -6
• Cognitive difficulties -9 (like a goldfish)
• Poor short term memory -9
• New or worsened high blood pressure -8
• Glucose intolerance that may lead to diabetes -7 (pre diabetic)
• Headache -8 (24/7)
• Bone loss, leading to fractures over time -8
• Thicker or more visible body and facial hair (hirsutism) -6
• Balding -0
• Irregular or absent menstrual periods -10 (since I was 17)
• Weight gain in the face (moon face) -8 (chipmunk status)
• and between the shoulders (buffalo hump) -0
• Upper body obesity and thin arms and legs -5 (gained 10 lbs in 6 months)
• Pink or purple stretch marks -0
• Thinning, fragile skin that bruises easily -8
• Slow healing of cuts, insect bites and infections -8
• Acne -8
• Increased thirst and urination -10

Yep that's the wonderful gifts all wrapped up into this condition. The symptoms come on rapidly so everyday I struggle with finding balance and controlling what I can and cannot do. The mental disturbances are the worst and I find the anxiety very challenging to control. For now I try to find the "happy" in my day to fight off this stupid syndrome. I count my blessings and remember what people tell me, that this is only temporary and very much reversible and I am lucky my tumor is on the adrenals rather than pituitary. I'll try to be patient as much as I can and know that everything happens for a reason. I am thankful for the people who are supportive and making me feel loved through this process. I don't think I would make it through this time without my support system. The other day I woke up to a sentimental text from my SO that made emotional.

Muffin has been so supportive and loving than I could ever imagine during this time. To know that he will stick by me through sickness and love me at my worst is a sure validation of our relationship. There are stories of husbands leaving their wives because they could not handle their wives cushing's manifestations and that is the saddest thing. I can't even imagine the hurt, especially with the deep depressions one can experience. To leave when someone needs you the most is heartbreaking and those type of men who try to take the easy way out deserve to go to zombie hell. They will regret that very much one day and their recovered wives will have moved on, happy, out living their brand new lives. There was more I wanted to blog about but I forgot. Alright I think I'm done for today my brain is tired. Here's to patience and support.

LOVE love yourself

I recently talked to some women who have recovered from Cushing's and they have been so helpful with giving me insight on how to be a Cushie and how to recover from it. So thank you ladies. One thing that struck out is that all of them told me I need to love myself more in order to have a good recovery. For some reason, most Cushie's blame themselves for becoming this way including myself. I spoke with a lady named Julie and she said "I think the most important thing I want to tell you is to not beat yourself up over what has happened.  Cushings is a medical problem.  You did nothing to deserve it; it just happened.  You will recover but the process will be slow.  You must be very kind to yourself as you recover.  You must surround yourself with people who love and support you." Thank you so much for telling me that Julie. 

So far my symptoms are somewhat under control besides the muscle and joint pains. My awesome doc prescribed some beta blockers that has been helping the anxiety feeling and rapid heart beat. My lovely boyfriend has been giving me massages at night so It helps plus I try not to be on my feet for longer than thirty minutes. Also My wonderful sister has been coming over to help with whatever I need to do in the day time. The memory loss and lack of focus is an issue but oh well I prefer not to remember much these days anyways lol. Before knowing about my condition I thought all these symptoms were due to me getting older and use to joke about it but truly feel like a senior citizen now lol.  Another helpful advice I got was to not fight it and get frustrated but rather have acceptance that some things I simply cannot do I don't have control over and it is okay. it's just temporary. It's okay to have others do things for you in the mean time. For the longest I have been pushing myself to work, study, drive, cook, clean, run errands, going out with friends or seeing family. Seeing friends and family is the worst because they have so much expectations and for some reason they want to be too involved suggesting too many things but hearing all their assumptions of "oh you must feel this way" "oh you need to do this and that" is not very helpful because they have no idea the mental aspect of this syndrome. Yes online there are lists of what a cushing's patients physical symptoms are but there should be a long list of the mental, cognitive, emotional signs and symptoms. I no longer have the energy to explain to people what goes on in my brain of how this syndrome causes me to feel. That I can only be around certain people who are with me 24/7 or from day one who do not trigger my panick attacks since they understand how to handle it. I now have to limit conversations with my mom. I know with family it's from a place of sympathy and love and I love them to death but for a cushie, it just feels overwhelming... All the women i've spoken to told me the fastest thing that recovers after surgery is that their state of mind changed instantly and the anxiety was gone. So I look forward to having that normal feeling back. whatever "normal" is since I thought all of these feelings were normal but they aren't.

 I've always given in to expectations of others and myself because I don't want to lose control over what I can and cannot do but I think It's time for me to know my limits and see it as a step to loving myself more. I found some videos and other fellow recovering cushie's that's been so instrumental to me.

- sharmyn's story youtube
-Steph's picture timeline
-Cushing's disease, moods, bi-polar youtube
-puremoonlite's recovery youtube

Feeling defeated

Today is rough. Let me warn you this is entry is full of me complaining. It's cold outside and this morning I went to take the dogs down and my muscle and joints are in so much pain I just stood there for five minutes bc I couldn't even move an inch with stabbing pains all down my thighs n legs. I'm so frustrated I can't do anything right now. I walk and get dizzy after five minutes. Last week I was cooking and lost all train of thought and put soap into the food i was cooking. I can't make any kind of plans because I don't know if I can make it through the day without this awful fatigue. I wake up every morning with headaches. When I eat anything i feel a heart attack coming. I can't carry on a full conversation without moments of blanking out. I hate this I wish I can get surgery now but it's all about waiting. I wish I had some kind of control over my mind and body but all I can do is wait for everything its so frustrating......... To wake up everyday and see your health declining so rapidly is very hard to accept. I am a prisoner in my own body and mind. I know I have so many things to be grateful for but it's getting harder everyday. I pray to god I have the strength to get through this. I know I will. I just needed to complain. -___-

The Journey Begins

BACK STORY: My health is my pride. Growing up, I was the overweight chubby little kid. I was always active but I liked my chips, soda, and mcdonalds. That was until when I turned 11 that I decided I had enough of being chubby wubby and went to lose 20 lbs from diet and exercise. Let me say that quality of life gets much better once you lose alot of weight. I was always active skating, biking, and running around the neighborhood with family and friends. After that I continued to remain fairly thin and healthy. I would do sports like track, rotc, and cheerleading to stay active in school. I did have a certain time where I had a partying and drinking phase but who didn't and now it's over and done with. If there was a new health craze, I would be the first to try it. Friends and I would sign up for bootcamp, kickboxing, and pole dancing classes etc... I've even graduated from the 60 day Insanity workout program. I've tried detoxes, cleanses, eat veggies, fruits and drink lots of water in the name of health. I am always energized and never got sick. My health is my pride, I must be healthy right? Wrong...

SUBTLE SYMPTOMS: Last summer I was working and going to school. I felt stressed but nothing major but i had a weird feeling of my body in constant excitement. I couldn't sleep much but had a lot of energy yet felt fatigued. Then my period stopped but my cycle was always irregular since I was 17 so I thought nothing of it. Suddenly my acne got terrible and I started to gain a lot of weight in my cheeks but I just assumed it was stress and it will pass. My face especially my cheeks started to get really round but I've always had chipmunk cheeks so I didn't think much of it. Then I started to feel anxious all the time and it progressed to panic attacks at random times and places and when I say "panic attacks" I meant full blown ones where I thought I was going to die because I could not breathe and felt like I had heavy bricks on my chest. After those episodes, the feeling of the "heavy bricks" on my chest still remains til today. I started to become moody and was acting aggressive towards family and friends. I was becoming a person I did not recognize and wondered why I was feeling this way. Friends and family started to ask if I was pregnant and why I was breaking out.  One of my boyfriend's mean teenage sister said straight out in front of the family "you're fat now" and she started laughing at me. They looked at me like I was purposely letting myself go and doing this to myself. I was a confused mess. I was going through conflicts with some relationships and I assumed it was just more added stress. I felt like a terrible person so I decided to start going to meditation center for two months but I still had the "heavy brick" feeling on my chest and all the other symptoms. I was becoming depressed. My boyfriend tried to convince me to go see a doctor but I was too stubborn to agree. Note: my worst fear is to lose my mind or become mentally ill (no offense to anyone, I do think we all are to a certain degree) so I ignored all the signs and figured I will somehow fix this myself because my health is my pride and I have total control over my mental and physical health. That was until an awful attempt at suicide one night because I felt like I wanted all the strange feelings to end. It was a wake up call that I became what I feared the most and though I thought I had everything in control,yet my mind and body was slipping away. My boyfriend once again told me it's urgent to seek some help. Feeling defeated, I agreed.

THE DIAGNOSIS PROCESS: In January we made an appointment to see an endocrinologist. The Dr ordered me to take many blood tests and labs. Let me tell you that waiting for lab results is probably the worst part because it takes one to two wks for results and you're just thinking of the worst case scenario of "what ifs". the tests came back and the results were all normal except for one thing, I had abnormally high cortisol levels in my blood. The Dr thought it was a fluke so he ordered more blood tests. Great, more waiting... The next test revealed the same results of abnormally high levels. He then asked if I could take a ultrasound of my ovaries. then the results came back that I had Polycystic Ovarian Syndrome due to no menstrual cycle. okay good I thought, he'll just put me on some birth control and I will be fixed. Wrong.. He then ordered me to take a saliva and 24 hr urinary test. The results came back that my adrenals were pumping out abnormally high levels of cortisol and adrenaline. He then got concerned and had me go get a CAT scan. The CT scan was terribly invasive. I felt like a microwaved chicken for 15 minutes lol. Anyways I was getting worried as to why I would need a cat scan. I had to wait a week and my symptoms were getting worse coupled with joint and muscle pains now. Finally the day of meeting my doc my boyfriend and I were anxious to hear the results. I didn't sleep all night oddly fearing that we cannot find anything wrong and that I will forever keep taking more health tests and it is indeed a mental illness. The Dr comes in and with sympathetic eyes and asked me how I was doing. I knew then that the news would not be good. He then said "Van, this is alot to take in but you have an active tumor on your adrenal gland that is causing all the symptoms you are feeling. It is imperative to have it removed or it can potentially be fatal." he explained that the tumor is secreting hormones in my body that is causing me to have Cushing's syndrome. How could this be happening? I hear my boyfriend and my doctor discussing outcomes, costs, surgeons, health risks. But I had no idea what to think or where to start. I felt like passing out. How do I tell my family? How will I pay for this? What will happen to me after recovery? It was the longest drive home. My boyfriend decided to stop by berripop to cheer me up. We sat and ate yogurt. My boyfriend then looked at me and said "this isn't what we expected or prepared for, but hey hun guess what? I told you you're not crazy." That made me realize that my worst fear did not happen and I do have control over this situation. Also I am blessed that the tumor is not cancer and once it is removed, the Cushing's syndrome will go away and I am expected for a full recovery though it may take months to years depending on how long I've had it. My doctor told me I've been living with it for years now but the symptoms are now fully showing up. I suspect it started from when my periods became irregular. Looking back, no wonder I've always felt so anxious, stressed out, and aggressive for no reason. I never had regular sleep patterns and always gained weight in my cheeks which is typical "moon face" symptom that all Cushie's develop. I've always been a little furry lol and started to develop acne when I was around 19 but never had it in highschool like my mom and sister. The older I got the more I felt less like myself mentally and It was to the point I felt like my mind and body was falling apart. I always just blamed it on external things in life but now I know. It's hard to describe and understand what I was and am going through unless you're a Cushie yourself. but it's like you have no control over your mind and body everyday and the symptoms get worse and you don't know how to fix it. But It all makes sense now. From reading other's recovery story, the diagnosis is just the beginning of the battle but at least i know what I am dealing with and I am ready to take this journey to claim my health back.

my delicious cat scan smoothie lol

I had no idea an IV was needed for the scan

Healthy Yet Sick: Adrenal Tumor/ Cushing's Syndrome

Hello this is my first time blogging. I will start out saying that last week, I was diagnosed with a tumor on my right adrenal gland (top of kidneys) and I have Cushing's syndrome. I have been living with this for years but had no idea until now. This blog will journal my experience from diagnosis to recovery and share my story to others out there who are struggling from adrenal disease. There is not enough information out there about Cushing's and adrenal tumors. More often Cushing's disease is associated with tumors in the pituitary gland in the brain not adrenal gland. Adrenal tumors are rare since it only affects 2 out of a million people for both adenomas and carcinomas. Both are also 4 to 5 times more common in women than men. YEP i'm that lucky 2 out of a million. This condition is more common in horses and dogs than in humans. Well this is just a diary to help me cope through this hard time but maybe others out there like me will find this and I hope this can help someone else.