Tuesday, March 26, 2013
Feeling defeated
Today is rough. Let me warn you this is entry is full of me complaining. It's cold outside and this morning I went to take the dogs down and my muscle and joints are in so much pain I just stood there for five minutes bc I couldn't even move an inch with stabbing pains all down my thighs n legs. I'm so frustrated I can't do anything right now. I walk and get dizzy after five minutes. Last week I was cooking and lost all train of thought and put soap into the food i was cooking. I can't make any kind of plans because I don't know if I can make it through the day without this awful fatigue. I wake up every morning with headaches. When I eat anything i feel a heart attack coming. I can't carry on a full conversation without moments of blanking out. I hate this I wish I can get surgery now but it's all about waiting. I wish I had some kind of control over my mind and body but all I can do is wait for everything its so frustrating......... To wake up everyday and see your health declining so rapidly is very hard to accept. I am a prisoner in my own body and mind. I know I have so many things to be grateful for but it's getting harder everyday. I pray to god I have the strength to get through this. I know I will. I just needed to complain. -___-
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.
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.
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| my delicious cat scan smoothie lol |
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| I had no idea an IV was needed for the scan |
Healthy Yet Sick: Adrenal Tumor/ Cushing's Syndrome
Hello this is my first time blogging. I will start out saying that last week, I was diagnosed with a tumor on my right adrenal gland (top of kidneys) and I have Cushing's syndrome. I have been living with this for years but had no idea until now. This blog will journal my experience from diagnosis to recovery and share my story to others out there who are struggling from adrenal disease. There is not enough information out there about Cushing's and adrenal tumors. More often Cushing's disease is associated with tumors in the pituitary gland in the brain not adrenal gland. Adrenal tumors are rare since it only affects 2 out of a million people for both adenomas and carcinomas. Both are
also 4 to 5 times more common in women than men. YEP i'm that lucky 2 out of a million. This condition is more common in horses and dogs than in humans. Well this is just a diary to help me cope through this hard time but maybe others out there like me will find this and I hope this can help someone else.
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