OCTOBER Cushing's Advisory Board in New Jersey

I am pleased to share that I was invited to A Cushing's Disease Online Influencer Advisory Board In New Jersey. My sponsor is company called Novartis which specializes in finding care and cure for rare complicated diseases. I was asked to come to the Advisory board when they found my videos and blog. I am really happy to be able to have this opportunity to be a part of something for our Cushie community. Thank goodness there are companies like Novartis that cares about us.

Being sick with a rare disorder or disease is hard because there is limited information out there which leads to limited knowledge when we search for help. There is a small community and there are less known medications for us. That's why doctors have a hard time recognizing a rare disorder and it makes it much harder to get the proper treatment, I don't like to always compare it to Cancer or ALS (god bless the people going through those) but there is little awareness. When you see a pink ribbon you automatically are aware of breast cancer. When you see an ice bucket challenge you think of ALS. What about Cushing's? Sure we have Cushing's awareness month but it is only known in our small community. How do we get it to be known worldwide like a pink ribbon would? I know soon our time will rise. Soon enough our little blue yellow ribbon will be known.

 When I first started doing this blog, it was just an outlet to complain because I felt like nobody understood what I was going through. Then I started to research and reach out to other patients and found a safe haven in online forums and other blogs but I had no idea people were reading my blog and seeing my videos. I was at a point that I didn't want to check my views because I thought that no one would even watch or read so what is the point? It was only when I got my first email from a Cushing's patient was when I realized that people are watching. I then checked my youtube account to see that there were others like me trying to reach out for answers in the comments. Now for Novartis to reach out to me is very exciting and I cannot wait to meet the people behind this amazing company. And I think I may also meet some cushing's patients in the flesh!
Below is the link to Novartis website and statement:

Our mission

Our mission is to care and cure. We want to discover, develop and successfully market innovative products to prevent and cure diseases, to ease suffering and to enhance the quality of life.

http://www.novartis.com/index.shtml

Disclaimer: 
Novartis provided me with information and paid for travel, accommodations and meals during our time together. 

My meeting with a friend from my blog 
  October is such a great month. A friend from my blog reached out to me a few months ago. She knows that her body is showing some abnormal symptoms. She is in the stages of testing everything to see what the problem may be. She did have a recent stay in the hospital for another health problem. Having abnormal symptoms almost like Cushing's may indicate some kind of mystery health issue that needs solving. She was traveling to my city last week and so we decided to meet up. We talked and hung out for hours and she is really an amazing person with a big heart. I feel so lucky to be able to meet someone like her that we all can relate to. I can relate to her on many levels since we are both too young to be feeling this way. Come visit Houston again Adrianne! Or maybe we can meet up at Sea world =] I ask that we pray for Adrianne will get her diagnosis soon so she can have good a healthy quality of life back.

So glad to meet this beautiful young lady ^.^ <3

 

If My Makeup Smears All Bets Are OFF!!

I'm kind of bored right now so what better way to be productive than to write down my thoughts. The last post I had made was basically me swooning over my lovely dude but last week on Valentines day, I was NOT swooning for him.

 On Valentines day we got into a heated discussion on the way to our dinner date and the discussion became me and him getting annoyed that neither of us understood each others perspective on a certain subject. Well in the moment, I felt like my Vday was going downhill. All bets are off when my cat eyeliner smears! >.< It was not how imagined our day to be. After that we lost our reservation and ended up driving down the street to a random restaurant. At 8:45pm, the line was very long out the door (and around the building) and the hostess said it'll be about 1 hour and 30 mins of wait. I was annoyed but instead of calling it a night we decided to just wait it out and went to the bar. We bought some wine at the bar and just talked to each other, not about the argument we just had but about random things, funny things, anything. (for ex: what was the worst thing you ever did to impress someone?) That will sure get a conversation started! Then our buzzer went off and it was our turn to be seated. My muffin looked at his phone and we both realized 2 hours had just passed and we didn't even noticed. But we were in a better place than we were before we left the house and before our argument. I want to write this down so I remember the lesson I learned was that our relationship is not perfect but if you choose to love and laugh then the rough patches become smoother. I try to remember now that I have a choice. Do I want to suffer and make others suffer because I am unhappy? Or do I want to be happy and my happiness makes the person I love happy too. haha now i'm confusing myself. Well that was my imperfect Vday story.

After Vday, this Sunday I ate some medium rare fajita meat takeout at Taco Cabana loll NEVER EAT rare meat from TC!! That was a bad idea... Well a few hours later I felt sick with a sore throat. The next day I felt terrible and that night I had symptoms of a cold. In the morning I was hot and sweaty but cold. My joints and muscles were in so much pain, my head was throbbing and my throat felt raw. Muffin immediately got up at 6 in the morning and went to Walmart and bought some medicine and a thermometer. When he got home he got some soup and took my temprature I was burning up to 102 degrees. He was worried because never had I gotten the flu and fever combo for years. and if it reached 104 I would need to go to hospital. I guess having Cushing's really suppressed my immune system and allergies until I had the surgery. Now I get sick pretty often but this was by far the worst. So Muffin was worried and decided to take off work to stay home and nurse me back to homeostasis or till I stabilized loll. So we doubled up on the Cortef steroids and stayed in our bed the whole day sleeping, checking my tempurature, taking meds and watching tv. Even though that was the worst fever I have ever experienced, it was my favorite sick day I've ever had.

^ The Soup Police!

 So I guess this is really a lesson that losing expectations on what you want and what you need. I don't know if that makes sense, im getting tired and my thought process is declining haha well have a blessed day for anyone who is ever going to read this entry! And remember that you have happy choices! <3

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

Trying to feel "normal"

So it's been 5 weeks since the op and I am trying to feel normal. I don't know what normal means but I still feel strange. I had to return to my normal medication doses because my self experiment was not very successful lol but I am going to try to taper again once I feel okay. The memory is somewhat improving I think? But then again I keep forgetting to take my meds at the right time.. -__-  My symptoms are still persistent but the good news is that I have a few moments of mental clarity but then the "Cushing's" feelings return. I might feel like a can breathe and relaxed for about 30 minutes to an hour a day usually when I first wake up and take the highest dose of meds.Then it starts to go downhill til I take the next dose at 3pm. The night time is the worst because that's when the weird fatigue, headache, nausea and anxiety etc feelings are the strongest. I can't make it go away and I am now having more nightmares of still being sick. It's hard to believe that I am fixed when I feel so blehhh. I don't know if I am coping very well but I feel traumatized by what has happened. I talked to some recovered women and they told me that anti-depressants helped them through the recovery process but I don't think I want to go that route. I believe that I am prone to depression because of the Cushing's and feeling physically blehh during this time but I am not depressed. So I am thinking of alternative therapy to help me cope. I find that walking a bit during the daytime helps and also trying to do more things I normally did when I was healthy though it's more of a challenge these days. I am still trying to find the right balance. I hope one day I can get to the point of feeling like myself again and being completely healthy and not having to think of Cushing's anymore.

To keep track of my progress and to remind myself that I am improving, I keep a daily log of improvements on the symptoms and also take weekly pictures. I don't feel or see a big improvement but family have commented that my moonface has been shrinking. My sandals are loose on me, tummy isn't as bloated and my glasses fit my face again!! lol prior to surgery my face got so swollen and big that my glasses were too tight haha I guess that is a good indicator that I am headed in the right direction. Though I may look a bit better, I still feel all sorts of weird inside. But I will continue to move forward the best I know how. Here are the photos from before op to post op. I tried to be consistent with the photos. It's noticeable how pre-op all the pics looked so dark and gloomy and my eyes are so tired and sad looking even though I was smiling and after surgery it's brighter and I kind of look happier. reminds me of that blue song I'm blue da ba dee da ba daa lol

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.