Showing posts with label diagnose. Show all posts
Showing posts with label diagnose. Show all posts

Friday, June 20, 2014

WOMAN WITH CUSHING'S COMMITS SUICIDE

I can't seem to wrap my head around this. A woman who suffers from Cushing's Syndrome kills herself by jumping off her apartment building 3 days ago. Such a tragedy. My prayers go out to her and her family.

The story is featured at New York Post:
http://nypost.com/2014/06/19/pedestrian-almost-crushed-after-cancer-stricken-woman-leaps-to-her-death/

Sunday, April 13, 2014

You Deserve the BEST Healthcare! & Why I Avoid Doctors & Clown Life

Hi guys, I just want to say sorry for the intense entry last post. I am still in the stages of Recovery and if any Cushie could tell you, it is quite the roller coaster of emotions. And It was the last thing I expected from a friend during my recovery to do but that's life. I remember reading somewhere about a story about how ducks tend to flap their wings a few times after a stressful event or even a a fight to release their stress out of their system then they move on. Well I guess writing is my way of flapping my wings to let the stress out of my system. LOL anyways, I wanted to talk about getting the most out of your healthcare.

It seems as this is a very common problem that patients face. We go to see a doctor for a symptom and somehow we get rushed out of the docs office realizing we forgot to tell them the most important thing and the tests we wanted
them to order or the medications you were interested in. And then sometimes we just get ignored by the doctor because we don't "look sick" enough. When I first noticed symptoms of irregular periods and hairloss, I went to see a doctor. I told her I was worried about my period and the doctor gave me a pap smear. She then told me everything down there looked normal so I would be okay. She then looked at my hair and gave me a look like I was crazy and told me there was nothing abnormal about my looks and sent me home. In a way I felt like doctor knows best but I couldn't help feeling that she could have done more for me as a doctor and I had much more questions that went unanswered as a patient. So a few months later I went to see another doctor. This time I wrote down all of my symptoms and how long they have been persisting. I then hand the list to my new doc. The doctor then tells me I looked like a healthy young lady and even though I am gaining a little weight, I was still small in the doctors opinion. They then talked to me about birth control pills that would help regulate my menses and maybe help with the hormonal symptoms. I knew that BCP was not what I wanted and that I wanted to figure out what was causing the symptoms rather than masking it. But at the time I was too timid to ask these doctors since they are the expert and the are so fast paced that it was hard to get a word in. So I left feeling like I just wasted more time and co pay for nothing. So, I took their word for it. I guess I was healthy but little did I know. I was very sick.

Having these bad experiences at the doctors seemed to repel me from going to get my annual checkups. I made every excuse not to have to go see a doctor. They will just ignore me, they will just waste both our time, my money, and I will get prescribed things I don't want or need to take. So it took years later when I finally gave up and saw an Endocrinologist. A very expensive one I might add. I thought I was young and healthy and did not need health insurance.. Boy was I wrong about that one too. Well the month leading up to seeing my endo, I made another list of symptoms. This list was a very long one. I felt as if I was making these things up in my head as I was writing them down because it just seemed so dramatic. My list included: sad feelings, crying spells, rollercoaster mood changes, fat cheeks, no periods, belly fat, bloating, acne, hairy face and arms :( tired, joint pains, red face, orange hands, no bowel movement, hunger, weight gain, darkness on my neck oh yeah and armpits! and many more :( It just seemed like a list of symptoms for a sad clown but yes it was all real and all mine. Well I handed the list to my endo and he gave me the eyebrow and stared into my soul. It can also be very distracting that he was the most handsome Doctor I have ever met. And so he looked at me and started typing down all of my symptoms into his computer. Again, I felt the sense of being ignored. He then asks, " you ever heard of PCOS? Ever thought about BCP? I said no, But I am sure I don't have PCOS. I then tell him that I wanted to get to the root of my problem. He then gave me another high brow stare and said he'll do everything he can to figure out what is troubling me. I felt like I hit the jackpot. He then ordered every test under the sun and a few months later he weeded out the high cortisol as the source of concern. I had to take many dexamethasone tests maybe 4 times, then we moved on to 24 hour urinary analysis, saliva, and more blood tests. Everytime the results were positive but he kept making me repeat these tests. At one point I remember I felt like I was hitting a wall and all these tests were wasteful and pointless. I felt as if my fear was that he would be like every other doctor and send me home with no solution. A few weeks pass as I stood by my phone waiting for his call. He calls and tells me to immediately go get a CT that he ordered and I did. A week later I finally get my answer. This time I was glad I stuck through and found myself a diamond of a doctor. He saved my life.

I guess this story is to remind others that you need to be adamant about your health. You know your body the best. I get that doctors are the expert but they cannot diagnose you in the first visit. Sometimes if you feel like your symptoms are persisting. You have to demand to be tested for everything. Go look for a specialist who have treated people with your symptoms. You don't go to a chiropractor to get your tooth cavity fixed. Write down your symptoms. Track any changes. The process of diagnosing could take months and years. Be patient but be persistent. Never take no for an answer if you know you need medical intervention And mainly don't give up on yourself. You deserve the best service you can because it is your life. Have a healthy day!



Friday, September 20, 2013

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


 
 

Friday, July 5, 2013

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/


Friday, March 22, 2013

The Journey Begins

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

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

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

I had no idea an IV was needed for the scan