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

Feeling Better? A Good Surprise

Alright I'll admit I've been bad since my last entry.. I got curious to how I would do on a lower dose of steroids and self experimented. I took 27mg umm let's just say I didn't do too well. Yes I'm stubborn lol, although I'm not dying so I think I can handle it. I'll just keep it that way til the next visit to the docs which is in a month or so? Supposedly the magic number to stimulate the adrenal gland is 12-15 mg. I still have a long way to taper down... I think I might be feeling better? I see some improvement on some things and less in others. I guess I need to feel or see a huge difference to believe it but I am now livin life in the slow lane lol. We had some unexpected house guests this week.. lol

Vankey, Fatty &       ^^Tiny

Ever since the operation I haven't been feeling well or keeping track of the days going by. Yesterday there was a knock on the door I thought it was some delievery package and it was my best gal Jessica  holding some beautiful flowers. I forgot we planned months ago that she would come back one last time from Maryland to visit and I even wrote it down on my memo. Blame it on the short term memory! lol.. This will be the last time I see her for a while since she's in the airforce and will be relocating to Korea then Japan. I wanted to make a little memorabilia collage for her and found some old pictures of us through the years. Looking back at old photos is funny, I looked so dorky in the homecoming picture and what was I thinking going so blonde!! lol x]

2004

2006

2012

Today

I will miss her, & so proud of everything she's accomplished!

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."

Strange Disease, free surgery, bad test subject

During the time we were looking for surgeons, another recovered friend refer me to contact The National Institute Health. NIH has been studying Cushing's disease and syndrome and offer free surgery to patients who fit their protocol. I sent in my medical records weeks ago and the other day they contacted me accepting me as a case study.  I would love to help others learn more about this disease and what causes it, but I already had the operation so I had to decline. I read up on the study and you get subjected to different tests for a week prior to surgery, I already didn't do well with the bloodtests and catheter experiences at the hospital. I would have been a terrible test subject! lol But it is good to know there is a place a Cushing's patient can go if they cannot afford surgery and I hope they can find the cause of this strange disease. I am working on a recovery entry and will post before/after pics soon! Here's a pic of my doggie showing his night time support <3

One day soon buddy...

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