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

Sexy Pictures of My Test Results!

Haha jk about the sexy part. Some people like to post sexy "selfies" but I will post bloody test results! Hey, I put hearts to make it sexier lol <3 The blood test results are in and drumroll..... 

 

^^Lol nothing much to see here but last month I was .03 So that is something? Unless it's just residual medication I took the other day prior to drawing blood. Hope not. I was at .03 three months ago.. I get nervous before bloodtests not because of needles but I still feel iffy these days so if my adrenal gland was to normalize I would be dissapointed that "iffy" would be the new normal I have to live with.. But the test confirms the iffy feelings. Still long ways to go. I am feeling better than before so let's keep rolling with the good times & improving. Still got my patience socks on. If that is the only thing I learned from Cushing's then it would be a good lesson of patience. Yeah, for those who have experienced major illness ya'll know that getting sick is only the beginning. Now there are other concerns that are raising up. The doctors told me this would be expected to find underlying problems after since Cushing's masked alot of underlying problems with itself. For example my allergies came back. But that's the least of my worries. Sounds like a sad broken record but I'm sharing my truth and that's what's up.

The dizzy spells are still here. I feel light headed and numbness on my chest and face often. It's worse when I'm hungry or tired. My PCP told me my white blood count (WBC) is low so we are going to investigate.. Health is a tricky little equation..

 
I went to vacation last week and I could not be as active and snorkel or walk too much. But it was still a great winter escape nonetheless. Wish I could stay there forever! I'll post up some pictures next time but I'll preview a real sexy picture down here. =]

Sexy Paradise eh?

Body Progress Pic Update

^Bloated, I couldn't suck in my stomach lol

I've been kinda in a funky mood feeling extremely weak and dizzy. Yesterday I halfway blacked out. I started seeing grey and tingles then I fell in the hallway. So I greyed out lol.. It usually happens when I stand up too quickly. I feel  numb on my face & chest like I am not getting enough air in my lungs. which makes the anxious feelings worse. And the low energy feeling lasts all day. To get my mind off it, I took some pictures to remind me I AM getting better. And I want to share it here. The other day the nurse weighed me and the scale said 112lbs. I couldn't believe her I made her weigh me again. And I haven't been that low since highschool. I think even then I was 115lbs. So great my body doesn't hate me anymore! The weird thing is that my height was 5'3 but I use to be 5'5, before surgery I measured 5'4 - how did I lose 2inches???  I'm posting up some pictures with Cushing's and 6 months after Adrenalectomy. And the last one is a few days after surgery. The scars are healing nicely. So far I have lost maybe 2 or 3 lbs every month to a total of 17lbs! And what is my secret? Getting a Cushing's tumor removal! Lol I have barely exercised, or changed my diet, I do eat smaller portions because if I stuff myself I feel sick... Every time I try to run it is too painful & nauseous. And I am constantly craving sweets and carbs these days. I guess that is what low sugar and adrenal Insuffiency will do to you-- give mad cravings but still lose weight. I just walk for like 30 mins a day... But I am very inactive compared to before. So it is just a joy to see progress!

When Healing Begins

Now that I am free of the Cushing's Tumor, I am given a gift for the ability to heal myself. This is the gift that enables any damage that has been done to my health, body and mind in the past to be reversed. The damage that has been done was many things from the list of symptoms. However I need to address the damage in another form that I hold responsibility for. For a long time I never wanted to accept that illness could or had happened to me. In order to start my true healing, I needed to accept the situation for what it is, however I am one to resist the thought of something I don't want. But not only did it make the process slower, it caused more friction within my energy and finding the peace I wanted.

During serious ailment, the body is weak so there is no defense to protect the mind. The sickness tends to take over but we have to be conscious of the situation and accept it. It is not easy to do so especially for a sick patient. But we have to know that we are not our "tumor"-- the one that creates the painful symptoms, or even our mind-- the thoughts that can create bad feelings. Being aware of the triggers and fears are very helpful. What I have learned is that the only thing I needed to do was to let everything run it's course instead of fighting it with nonsense worry and thinking. I can accept that I am not who I use to be anymore. Now I am given a chance to change and become stronger, grow happier, and make peace with my life. And if it took all of this to happen then thank God it did!!

 

Happy Halloween!

This is a homage to the little kitty >.< Meo Meo!
 

I'll keep this one short. Dear diary, do not let me have a sip of hard liquor!! Let's just say I got wild and took less than 3 shots the other night and my stomach is still not happy today.. I guess one glass of wine or cocktail is fine but I think I gotta put my old partying days behind me. Atleast until my body will let me again haha.. Well HAPPY HALLOWEEN! ^.^

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!

A New Earth??

 

Started reading "A New Earth" by Eckhart Tolle and read this paragraph that made me go whoa... lol I thank this author because I believe it is true. Damn ego... =]

What Really Happened

This Monday I was on the verge of a panic attack I had the feelings come on so I tried to smoke some and drank a little Nyquil to calm down and sleep it off. BTW I do not console anyone to do that! EVER!! Well it didn't seem to help so I called my nurse and she told me to go to the Neuro center at my hospital immediately. So I went and texted Muffin that I was getting some help. Apparently the nurse thought I was committing suicide and called the cops and ambulance. Well, I did tell her I was trying to "stop the bad feelings" I guess it can be misinterpreted Anyways during the time I went to the center I had to give up my belongings and my cellphone. I stayed for a day and talked to some Psychiatrists about my health conditions and how nobody seems to understand. They told me that all of my feelings are validated and said I had a "rough childhood" lol I guess.. Once I got out I found like 50 texts and missed calls from Muffin and family members worried and that's when I found out that 10 cop cars and ambulance came to the apartment that night. I just want to thank everyone for caring so much and apologize for scaring up a storm. The truth from what the Psychiatrists concluded was that I do have suicidal tendencies. But don't worry I don't plan on taking my life or harming others. I DON"T WANT TO DIE. It's just hard living with Adrenal Insuffiency as it was with Cushing's. except for the fact that you don't bloat up like a balloon.

Well let's talk about some GOOD PROGRESS

Today I went to see my doc, I still am Adrenal Insufficient. So still on the HTR. When they weighed me I was 112 lbs which means I have lost 16 lbs since Adrenalectomy. That puts me back to how much I weighed back in HS. This is with little to no diet or exercise! Ohyeah! The weird part is that I have gotten 2 inches shorter. I use to be 5'5 and now i'm 5'3. I made them double check and that's how the cookie crumbled. Maybe it had to do with Cushing's and osteoporosis/bone loss was a symptom. But yeah I guess the only good news is the weightloss haha! Atleast I can fit into that dress pictured below I wanted to wear to Muffin's friends' wedding. Initially I had trouble zipping up the dress when I first got it but the day of, it fit like a glove. I had reservations about going to such a public place but who could miss a wedding in the name of love?

Where's Miley?

My S.O.

Love these nails! Essie Polish and Essie gold Applique

Childhood Bully, We Meet Again

I am not sure ironic is the word to describe this story but it was surely crazy coincidence and unexpected. So the other week I went to get the routine bloodcheck at the hospital and ran into who else but my childhood bully. She came out of the door and called me into the room for blood draw. At first I thought " wow she looks familiar, can this be the mean girl who tormented me throughout my childhood years?" But I told myself that it was definitely not her since she was such a terrible, snobby, hateful person back then how could she ever be allowed to take people's blood? This was the girl who made fun of my weight calling me FAT, told me I had ugly clothes, ugly hair, and turned other girls against me. She picked on me relentlessly for years growing up until I finally lost weight in the 5th grade and we started wearing uniform so she couldn't make fun of my clothes. she was the ring leader of the mean girls and it all started in Kindergarten! Well I just kept quiet because taking blood already makes me anxious and nauseous. She then tells me "hey I remember you!". Immediately I thought ohh man she's going to say you were that fat kid who was a dork. But instead she said, " you were that artistic girl who draws really well, and would draw everyone's portrait." I said "aww thanks, It's good to see you again". Even though that was the worst painful and slow blood draw... She poked me three times with the big needle and could not get any blood. Finally she used the small butterfly needle and got some blood. I do not see her as a villain in my mind any longer. Funny enough I found it amusing that something so peculiar happened. I thank that because of her, I overcame the sadness of being subjected to her victim as a child and grew past it and became stronger. I thank that the person who use to make my life miserable is now contributing to my recovery. How ironic is that?

Can we talk about bullying? I have encountered many mean people or bullies in different shapes and forms until today. They can be a friend, stranger, enemy, even a family member. Especially during my time of sickness prior to people knowing how sick I was, they were mean to me. People called me fat, lazy, and moody. Well I was fat because I was retaining sodium, water, and fat because of my tumor. I was lazy because I was tired because the tumor causes fatigue, I was moody because the tumor chemically changed my hormones. So I am the way I am because of my health condition. What is the bully's excuse for being such a douche bag? This is a message to a bully and to all of their victims:

Dear Bully: Why are you mean? Does it make you feel better to pick on others? Gossip? Are you insecure? Why are you angry at others? Do you blame ppl for what goes on in your life? You have to say or do mean things to others to make yourself feel better than them. The truth is that the person you are bullying are on a higher level than you because they actually can take the high road and do not need to act the same way as you, next time you want to be mean to someone think about the situation they are in. They could be sick, taking medication, poor, going through a hard time etc... You should have compassion in your heart and be thankful that you are blessed to have what you have that was given from God. Be thankful you are not in their position. Maybe you should try getting all your facts before you pass a jugdement on someone. The people who are bullied do not have regrets on how they have treated others. Even years from now a good person will not have a guilty conscience but will a bully? The bottom line is that everyone wants to be loved. If you are nice, people will love you easily, but if you are unkind, people will have a hard time wanting to stay close to you. and when that time comes you will know. To those who are being treated badly: I know that it is not easy during the time of being bullied. It sometimes feels extremely hard to think that life will get better but everything will be fine and life indeed will get better. When I encounter an ignorant person who has angered me, I realize that those feelings are not real and I will get past it. I just remember that some people are not able to see God in their judgements because they only see THEIR own perspective and not a bigger picture. Have compassion that they are only ignorant and cannot see past it. And the most important part is to have forgiveness in your heart. Thank you all the bullies who have made me closer to myself and to God. <3

PS. Jesus is the poster child for being bullied. He was bullied his whole life. He was bullied to death. He knows exactly what being bullied was about. He went through a terrible case of being judged, hated, picked on. He got crucified by his bullies! But he is now our God almighty!

F*CK YOU CUSHINGS

Been feeling crappy this week. Not being able to take hormone replacement for the routine blood test makes me wonky. Instead of my usual walk today, I jogged. My legs are going to fall apart now. Screw it, this shit isn't going to decide what I can or can not do. Something clicked in me this week that made it easy peasy to move on. To all my Cush sisters who are suffering, we will get past this because many others did one way or another.

Who Would Have Known It Would Be You

Here's a funny story.  like most hypochondriacs, prior to getting diagnosed I went to WebMD to try and diagnose myself. I typed in my 15+ symptoms and guess what popped up? PCOS, Adrenal fatigue, etc... and Cushing's syndrome/disease. What caught my eye was the Cushing's syndrome. It said a rare disease characterized by a moon face, depression, high blood pressure, anxiety, fatigue, muscle weakness, bone loss, amenorrhea, memory loss etc etc... anyways I ran to muffin and said "that's me!!!" but he told me it was too rare only 10 out of a million people get that so it's probably not.. But guess what? Not only was it Cushing's that I had. I also had the adrenal kind that affect not 10 but 2 out of a million... I'm starting to feel that my chances of winning the lottery might not be so far fetched after all haha! Okay not to scare anyone into self diagnosing because most of the time it is NONE of the above that you have. Just go to the doctor and it's probably less severe than what you imagined in your head.

I have been talking to a girl who is from my city Houston  and almost my age who suffered from Cushing's. She had her surgery in 2010 and is fully recovered today. She sent me some of her before and after pics and she is looking happy and healthy! So all of these people I talk to give me hope I will get there one day. It's crazy to know that someone in the same vicinity to get this so called "rare" tumor. I have always felt that maybe Cushing's is not as rare as we think but is often misdiagnosed or not at all since it is hard find the problem. But I do believe it is happening to a lot of unknowing, innocent folks. I really want to spread the word about this to help others who could be living with an adrenal or pituitary tumor. I get a few people emailing me freaking out about how they have the same symptoms and want to know what to do next. Okay first off don't freak out! It may not be anything at all. My first advice is to get your hormones tested!!! Check for Cortisol levels.  It is better to just do a routine hormone blood test to rule out Cushing's. It is beneficial to get a test for all your hormones to rule out Cushing's or any other problems you have. This one lady went for a checkup and found out she had Pcos. Any who, if you are noticing strange symptoms that is not " normal you" get your hormones checked!

The other week I found a sweet lost abandoned kitten and took her home a few days and found her a new home. Never was a fan of cats until now. Have a good life little Meo Meo. <3

 

 

Falling In Too Deep

During the days of my full blown Cushing's, I was really down. I'm talking about random crying spells, panicky feelings, suicidal thoughts, loss of hope, feelings of guilt and shame etc... I guess you can call that the depression that comes with the illness but it is not a regular feeling of sadness that eventually passes.. It's the kind that gets deeper and deeper and all the while you feel so low in your head, you're fighting the cognitive, emotional, mental, physical symptoms that haunts you 24/hrs a day. It's like I couldn't go out and enjoy life when everything would make it worse, even laying in bed.. It's impossible to escape the sickness. I myself was always a happy person but slowly I started to fall deeper and deeper since I was around 19 or 20 I would say I started to feel little glimpses of this darkness. During that time I would say the suicidal thoughts were not morbid but it was just a way of wanting some peace and control in my life. I wanted all the symptoms to stop but there was no way to. Medications, diet, exercise, loved ones, happy thoughts could not fix it. Nobody in my life seemed to understand.... I couldn't bear living with it anymore. The only way I thought was to put myself in a very deep sleep. The kind where I don't wake up.

I was sad and isolated from my own illness... Luckily I found a Cushing's Support group that had a list of Cushing's patients pituitary and adrenal from  all over the U.S. that listed their phone and email. Desperate for any kind of answer, I emailed all the adrenal cushing's patients for help. I asked them how they dealt with their Cushing's and recovery. I also asked them about symptoms and how to cope with everything. I pretty much had all the symptoms like they listed except some are more prevalent than others. All of the women I talked to understood exactly how I was feeling. They told me things will get better once I get the surgery and my remaining adrenal gland will start producing what it needs. They all were honest that the recovery is sometimes even worse but I just need to take my time and push through because there is a light at the end of the very long tunnel. I just want to thank all of the ladies that helped me through those hard times. I am feeling like I am at the middle of the tunnel now and am feeling better today.

I want to say that after surgery, tapering replacement too low can make you feel extremely low too. About three weeks ago I was feeling that sadness again from tapering and PMS. Luckily I talked with a Cushing's patient Marian who connected me to a girl named Jess who was about the same age as me who had her surgery a few years back. We talked several times and she is happy and healthy going to College now. I was feeling sad that I am still adrenal insufficient, puffy-ish, and guilty that i'm not strong enough to deal with a lot. Stress just makes me so exhausted. She told me not to worry because she felt the exact same way and what I need to do was not push myself and to take a break until I start to feel stronger. I also have been seeing a wonderful Nun who talks me through whatever I am feeling. She gave me some wonderful advice that I want to share with you all she said, "this is the time to take a break and find your peace. Love yourself and let God handle everything else. God wants to help you heal but you cannot heal if you do not give yourself time to. Most people do not make the time to make peace with themselves. So see that this recovery time is to give it all to him, the pain, symptoms and you will have peace." eversince speaking to these women I have felt like a huge weight lifted off my shoulders and my days have been brighter eversince. Thank you everyone! This is great advice for anyone sick or healthy. I am starting to feel some peace and control again. I am not fully there yet but I am glad I am feeling awake and somewhat snapped out of the living nightmare called Cushing's.

There's not much but to wait it out during diagnosis, surgery, and recovery but here's a helpful link:
How to Cope with Cushing Syndrome or Disease

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

Hello Bones!

I know that the word bone sounds kinda morbid but I have to share the delight I have found these past few weeks of improvement. The other day I looked in the mirror and saw my collar bones again! It's crazy that during Cushing's I had no kind of collar bone, spine, cheek bones etc... But now all of those bones are visible again. I am starting to have a normal shape back. Yes, it is still very slow but I can no longer deny that I am improving. My tummy is getting so flat and my butt is getting rounder and I have not diet or exercised since the surgery! I have lost 5 lbs somehow. Trust me when I say I have been snacking on junk lately. Carbs, sweets, fried foods, the whole shebang. My appetite has suppressed a lot but I can eat more and not feel that weird panicky feeling. The other day my family members commented on how different I am starting to look since the surgery. My eyes look more awake and my lips are getting plumper lol and my chin is more visible. Idk how to explain all of these changes. Maybe it's no more water retention? Hormones balancing out? It's funny how when I was sick I dieted and exercised like crazy and nothing really happened. Last year I did insanity workouts and ate lettuce for 3 months I lost around 5 lbs but I gained it all back within a few weeks it was so strange, then after that I tried to continue working out and eating healthy but the inches and pounds kept adding up. Nothing I could really do about it. I remember I looked in the mirror and did not recognize myself but now I am starting to see a glimpse of myself again. I later just gave into the Cushing's instead of fighting it because I was so exhausted about all the worries and needed a break.

I am still super tired but that is fine with me. I'll just continue to rest until I physically and mentally feel better. The other day two of my incisions got infected and was leaking pus it was gross and painful but I cleaned it and noticed the stitch threads were poking out so I pulled them out.. It hurt like a b***** but my surgeon directed that I keep an eye out if it worsens. My skin is improving more also but that definitely takes time since I am slow healing. Still get weird bruises and scratches out of no where and tried to start exercising but bones still hurt. I still get the fatigue and moments of feeling crappy but it is not an all day thing now. Still have not gotten aunt flo. The docs prescribed me some bcp but I tried taking them and felt like dying so I stopped. I guess I'll continue to have to wait it out some more. I should do a whole body pic before & after but I don't have anyone to take the shot so I'll just post up pics of my collar bones!


w/Cushing's syndrome/ no visible bones

Collar bones yay!

Chipmunk Syndrome

Cushing's syndrome is a lot like this lol... I do find myself eating a lot of pistachio nuts

How do my cheeks look?

 

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!

Undiagnosed, Untreated, Unheard

The other day I talked with my surgeon and doctors about how my symptoms are still persistent and they told me in most cases it is always a delayed recovery. They say most symptoms will have a significant improvement after 6-12 months. That doesn't sound too bad from a normal perspective, but having to live with it everyday makes it hard to tell if you're getting better, then when it gets real bad you just feel like it's never going away. From what I read on researching this illness, most patients go undiagnosed, untreated, and unheard for so long then after they have the surgery, they go unheard again. Luckily I have my surgeon who is educating medical students about Cushing's and listens when I complain. He sent me some new endocrine journals and articles about long term studies and evaluation of the disease. It talks about how there needs to be a better way to improve the recovery process because it is tedious for the patient and often after the surgery, the patient is expected to be "cured" however they have to deal with all the difficulties of recovering themselves. the other study talks about all the issues that come with the recovery and how symptoms improve. there's more interesting things discussed so I will post it up. In my opinion there definitely needs to be more support for Cushies after surgery from the Medical care that may help them feel as comfortable as possible. Maybe requiring more followups, requirements for psychiatric assistance, and some kind of better booklet that tells everyone what to expect after because it just seems like every person I've spoken to were unprepared for the long road after surgery. Oh yeah they totally need to update their booklet for symptoms!!

 I told my doc that I use to have dark orange tinted hands that even my bf noticed. The doc told me that only pituitary patients get the orange hands and not the adrenal patients... How is that possible? well it is the same illness, just different area of cause but idk doctor, my hands are not tang tinted anymore post surgery, just believe me and take note please... I did read somewhere that another adrenal patient had orange hands so it has to be a real symptom... I told them how tired I've been feeling and asked if it's related to the blood test and they say "possibly, but we are not sure". No disease or syndrome is "one size fit all" because some patients may experience much different symptoms than others but it is all real and needs to be heard. This disease is hard to understand but we need more help to unravel this mystery! Ahh this sucks.. I tried to post up the endocrine articles but it can't be shared and you need a membership to access these files.. Ok I guess i'll just put a link to a story about a woman named Shannon. Her story is another one that gives me strength, you gotta read it till the very end.
  http://cushingsdiseasestories.com/

Things Not to Say to A Sick Person

The other day my sister and I were having a discussion and she told me that somebody who she knows-- let's call her Suzie (I'm trying to keep it anonymous) suffers from a behavior disorder, and one day Suzie told my sister about her condition to explain why she is the way she is and she cannot help the way she acts and feels. She said that the disorder takes control of her thinking and she takes medication to feel stable because she tends to have anger issues and a lot of misunderstandings due to her condition. Well my sister listened to everything Suzie had to say and my sister then said "I'm sorry I understand and know how you feel" then Suzie got really mad and angrily responded " How would you understand or know how I feel?". Of course my sister apologized again for it and tries not to say anything that could be misconstrued to Suzie again.

My sister then later came and talked to me and told me what had happened with her and Suzie. I then told her that the saying " I know how you feel" or "I understand" is my trigger too lol I don't know why but I guess a healthy person cannot fathom at all what a sick person feels or goes through on the daily and so they cannot say those kinds of things. I know that it comes from a place of sympathy and empathy but In my opinion the sick person wants to just talk and let out some steam from their condition and what they really want is just a lending ear from someone who cares. So my sister asked me what can she say or cannot say to a sick person. And I told her, The sick person doesn't want any kind of advice or suggestions so don't feel the need to give any tips unless they ask for it.
For example: you shouldn't say, "why don't you try (blank) it'll make you feel better" because the sick person would think "well you think that if I did such and such I would suddenly be healthy again?!"
 then you say"things happen for a reason" the sick person would think "so are you saying I got sick and got tortured mentally and physically for some kind of reason?"
oh and my #1 favorite is "You must feel (blank)" --why is that the worst thing to say to someone? because sick or healthy, nobody likes to be told how they are feeling. nobody knows how they feel except for the person living it. I would never want anyone to have this illness but if you can walk a mile in my shoes, then you can say that or whatever you want.

lol so I was reading other blogs from other chicks with chronic illnesses and found some funny quotes and lists of things not to say to a sick person. I'll post it up. Well thanks for reading and remember not to say these things:



(I wouldn't wish what I have on anyone, but unless you get it, you just don't get it)

 

 

 

I love pugs

 

 

 

Oh Bloody Heck I'm still Young!

Today I went to get blood work done yay my favee!! My docs instructed  for me to not take my meds for 24-48 hrs. We will see the results next week if lazy lefty decided to wake up yet. But omg When will I ever get over the fear of needles?! The guy who took my blood had trouble finding a good  vein to stick the needle in and he said I have dainty veins. umm dainty?? lol I just told him to please please hurry up and get it over with. Anyways I was told to avoid stressful activities since I won't have the cortisol in my body to cope. but a bloodtest in my book is a stressful activity has now become my regular friend.

I mentioned some time ago my struggles of coping and  fearing the Cushing's will return. I don't want to go on anti-depressants or anxiety meds. So I went and talked to a behavior counselor and he told me it is often normal for an ill patient to feel that way though they are surgically "fixed". It's kind of hard to feel fixed when the symptoms are still there. Though my surgeon still reminds me that I am more than good lol Some people think it's just simple surgery and the problem will be gone which is not the case with the Cushing's patient. He did say that it is very rare for a young person to become this ill and usually it happens later on in life when people are wiser and can cope with a big stressor like illness, surgery, and death. He explained I'm still young and I was suppose to see my elders get sick first instead it was vice versa and he told me that this major event was equal to losing a limb or death of a family member. His advice was that I need to accept that it just happened and I did nothing wrong And like everyone else, he advised me to only do things that makes me feel good from now on. Yes I agree! Life is too short! I was already trying to do that but it is definitely easier to navigate and follow instructions from someone with this kind of insight. We talked for a long time and it did help me feel better even though some symptoms are still present. I am still learning about what I can handle. This week due to low meds: My joints are having sharp jolts of pain but manageable and the dry itchy skin is crazy, not manageable! I've been feeling more tired and have been sleeping a lot. I am so happy that I can take full naps now! Excitement due to good or bad stress leaves me feeling exhausted. But that is good I can take more naps! lol I cut myself chopping an apple and it hurt like hell! I have a headache but not as extreme as usual. The moments of mental clarity are still improving but  improving ever so slowly. Thankfully the people in my bubble aren't pressuring me to recover quickly even though I have wild expectations for myself. As the smart Dr. Seuss once said," those who mind don't matter and those who matter don't mind." =]

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...