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Showing posts with label symptoms. Show all posts
Showing posts with label symptoms. Show all posts
Saturday, December 13, 2014
Rae and Van's Symptoms
Hey guys, My friend Rae and I made a symptoms chart to compare how different our symptom manifestations were though we suffered Cushing's Syndrome. So don't judge a book by it's cover. So sorry I haven't been updating the blog, if you follow my Instagram @1delicateheart it basically will update what's going on in my life.. and of course I spam you with a lot of outfit of the days and selfies :)
Our comparison charts are rated from 0(none)-10(worse)
If you have a chance please check out 2cushiegirls.blogspot.com
Our comparison charts are rated from 0(none)-10(worse)
If you have a chance please check out 2cushiegirls.blogspot.com
Tuesday, July 22, 2014
Does Your Pet Have CD??? My New Strange Symptoms
I saw a picture of this poor pup on a cushing's blog and it broke my heart. The blog claims he has CD but I can't find much more information on him.
If you see unusual changes in your dogs appearance (swelling, obesity, agressive behavior, hair changes) much like a human cushing's patient, I encourage that you investigate your dog to rule out any health conditions. The bulldog above looks like a very extreme case but who knows what other condition he had and just like us, we all react differently to the disease but I sure as hell felt as swollen as the dog when I was sick. I think in researching animal/canine cases is that the potbelly is very visible and the fur coat looks abnormal. (most horses have the crinkled hair.) It makes me sad that many get euthanize or suffer silently never going noticed since they cannot talk to us or even complain. Please watch out for our little angels.
So I've been quite busy moving and for the past 2 weeks have been over exerting my energy. I am on a higher dosage since my last failed attempt to taper/wean. So far I was feeling okay until last week, ive been feeling nauseous/dizzy/headache combo everyday. At first it feels minor but when it persists for days, it starts to feel too intense. Yesterday I was in a electronic store and just felt like vomiting though I couldn't on an empty stomach and had to be dragged out and laid curled up the whole way home. Everything can trigger it from smells, lighting, temperature or being active. I've also been having a pins and needle feelings on my hands, arms, legs and feet. At first I thought it was a insect biting me but at a closer speculation I notice it's a vein or just some kind of nerve prick. It's happening frequently and is quite bothersome. I can have the sensation on multiple parts simultaneously. I don't know why I am having these symptoms, if anyone has an idea please inform me. I am just at a point where I am tired that there is still no ending to these health issues. Maybe there's still something underlying that needs to be addressed? I just hope I can find a resolution and find some peace in my body.
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| Pot belly in cushing's dog |
Thursday, June 26, 2014
Tapering Steroids+ Adrenal Insuffiency= Me Fainting
HORMONES AFFECT EVERYTHING. Long ass entry today =]
Two weeks ago my doctor told me I need to try to lower my steroid dosage as the less I have in my system, the more likely my pituitary and adrenals will realize they need to start working again. If I don't feel well then to up the dosage to something that makes me feel a bit normal. I went from 15mg to 10mg and boy does it make me feel sick. Who would think that this little difference would make such a huge impact to my overall health. So far since tapering, I have had a sinus infection which was so horrible I have never had one of those in my life. A cold and sore throat. And then now I am having lady problems and stomach aches. I went to see the doctor and they told me that my pap smear exam was abnormal and want to do further testing for infection.. Oh yeah not to mention I fainted twice this week.
The feeling of Adrenal Insufficiency is that the longer you go having it, the worse it feels for your body to have to do the work without the help of it's sister glands functioning. I have a dull headache, bad allergies, a terrible feeling of nausea that lasts all day. It feels like one minute I think I am feeling better then boom like clockwork I feel like I was punched in the face with the nausea. I feel dizzy. There is numbness and tingling that come and go on my limbs. My heart feels like it is working extra hard to beat. And overall I feel a sense of lethargy, tiredness, and worn down. Oh yeah not to mention my face is so tired that my under eyes look like black panda eyes since tapering.
Today while I was trying to make some icecream, I blacked out in the kitchen. At first I felt the tingles on my face and fingers. Then turned into numbness all over. I couldn't breathe. I felt a heavy pressure on my head that traveled down to my legs and my legs couldn't hold my body up I just fell. I have been fighting the fainting since tapering. Ever since the last incident a few months ago I've been scared. I feel the tingles when I am doing house work, when I drive, and even just standing up from laying or sitting. I try to not stand up quickly. I worry when it will happen next. I may be hovering the edge of a full blown crisis if I taper any lower.
In my head I think that the less steroids I take, the quicker I recover. That is not the case. You will only hurt yourself. So, as much as I want to taper down and continue progress. I feel like this is too much for my body to handle at this moment. I know that 15mg is the sweet spot but I think I need to perhaps just take it down a notch to 14mg and see how good it does me. I just want to let others preparing for recovery that it is best to taper slowly. You cannot jump from 30mg to 20mg and so on then think you are progressing because your body will notice the difference.
Nobody of normal health could tell you this because there is limited information about recovery but I am telling you. SLOW DOWN and let your body heal. Hormones affect everything and a recovered patient once told me that this is comes with the territory. Listen to your fellow cushies. You need the steroids to help your compromised immune system. I heard someone shaving their pills down a bit to slow taper. Now I think that is smart and what I should be doing. I really hope I will feel better when I increase the meds. Sometimes it just sucks, why us right? We get fucked by Cushing's then trade it for AI. But just remember all that you fought for. And all the progress you made. Atleast you are far away from the moonface and panic attacks. Just have a bit more patience.
Two weeks ago my doctor told me I need to try to lower my steroid dosage as the less I have in my system, the more likely my pituitary and adrenals will realize they need to start working again. If I don't feel well then to up the dosage to something that makes me feel a bit normal. I went from 15mg to 10mg and boy does it make me feel sick. Who would think that this little difference would make such a huge impact to my overall health. So far since tapering, I have had a sinus infection which was so horrible I have never had one of those in my life. A cold and sore throat. And then now I am having lady problems and stomach aches. I went to see the doctor and they told me that my pap smear exam was abnormal and want to do further testing for infection.. Oh yeah not to mention I fainted twice this week.
The feeling of Adrenal Insufficiency is that the longer you go having it, the worse it feels for your body to have to do the work without the help of it's sister glands functioning. I have a dull headache, bad allergies, a terrible feeling of nausea that lasts all day. It feels like one minute I think I am feeling better then boom like clockwork I feel like I was punched in the face with the nausea. I feel dizzy. There is numbness and tingling that come and go on my limbs. My heart feels like it is working extra hard to beat. And overall I feel a sense of lethargy, tiredness, and worn down. Oh yeah not to mention my face is so tired that my under eyes look like black panda eyes since tapering.
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| Excuse my complaining but let's keep it real here. I look different today? I just don't have any make up on! |
Today while I was trying to make some icecream, I blacked out in the kitchen. At first I felt the tingles on my face and fingers. Then turned into numbness all over. I couldn't breathe. I felt a heavy pressure on my head that traveled down to my legs and my legs couldn't hold my body up I just fell. I have been fighting the fainting since tapering. Ever since the last incident a few months ago I've been scared. I feel the tingles when I am doing house work, when I drive, and even just standing up from laying or sitting. I try to not stand up quickly. I worry when it will happen next. I may be hovering the edge of a full blown crisis if I taper any lower.
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| Adrenal Insufficiency =] |
In my head I think that the less steroids I take, the quicker I recover. That is not the case. You will only hurt yourself. So, as much as I want to taper down and continue progress. I feel like this is too much for my body to handle at this moment. I know that 15mg is the sweet spot but I think I need to perhaps just take it down a notch to 14mg and see how good it does me. I just want to let others preparing for recovery that it is best to taper slowly. You cannot jump from 30mg to 20mg and so on then think you are progressing because your body will notice the difference.
Nobody of normal health could tell you this because there is limited information about recovery but I am telling you. SLOW DOWN and let your body heal. Hormones affect everything and a recovered patient once told me that this is comes with the territory. Listen to your fellow cushies. You need the steroids to help your compromised immune system. I heard someone shaving their pills down a bit to slow taper. Now I think that is smart and what I should be doing. I really hope I will feel better when I increase the meds. Sometimes it just sucks, why us right? We get fucked by Cushing's then trade it for AI. But just remember all that you fought for. And all the progress you made. Atleast you are far away from the moonface and panic attacks. Just have a bit more patience.
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| ^Recognize the symptoms of a crisis^ |
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!
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!
Tuesday, April 8, 2014
Cushing's Awareness Day
So I am a newbie here. I didn't know that April was the month to write a post everyday for 30 days for Cushing's awareness. I am 8 days late but I will try to catch up. Who's counting eh? Lets talk about symptoms and progress. Oh yeah thanks Marian for updating me on this!!
It's been almost 10 months since my adrenalectomy. Symptoms I still have is rapid heartbeat for certain things. Food can trigger it, high activity, social anxiety and caffeine. It's not as bad as before but it still happens maybe 2 or 3 times a week. No more panic attacks! YAY! No more paranoid feelings when I am out. The depression is much better. I find myself enjoying life more. I am socializing again and doing more of my hobbies. My menses come once every two months. I am getting more tired lately and extra unmotivated to get things done. I don't know if it is related but before I could multitask and wake up early but now it feels impossible to get out of bed. My memory is getting pretty crappy. The short term memory is bad. I repeat things and lose things that are right in front of me. Everyday is a struggle. Can't remember what I am studying and my textbook is a puzzle to me. I will be getting a brain MRI in a week to figure out why I am having headaches every night and the memory problems. THE STRUGGLE IS REALLLL lol hmmm.. weight is still stable. I am eating lots of fast food, takeout and restaurants. I have mad sugar cravings. Still get faint often.. The nurse says I have low blood pressure so i guess that's why I will eat a cookie then crave another piece of chocolate. SIGH I hope this won't make me gain weight once my hormones regulate.. I have absolutely no motivation to eat healthy and go workout or be productive versus before surgery I was working, going to school, eating super healthy and working out. Now I have to find great effort to do simple things. My bones still hurt, I tried to squat and heard my knees crack and pop and it hasnt stopped cracking ever since so I guess no squats for me. lol I will probably get a fat ass from eating all these carbs i'm inhaling anyway. The hairy-ness is sooo much better. This guy in my class said he hates hairy arms and asked to look at mines and said I had nice hairless arms. HA! He should have seen me a year ago. I was a furry hamster... But yeah I shaved my whole body and the hair growth is much thinner and almost blonde so that is very good progress. The acne is better as you saw in my last video.. But I still get pimples here and there so I still feel paranoid about that. The hair on my head is filling up nicely. Just got a fresh cut and now my hair feels so soft! Okay there's so more stuff but I don't remember so I will post a better blog next time. I am a little distracted right now =] Here's some pics of my haircut and progress pic!
It's been almost 10 months since my adrenalectomy. Symptoms I still have is rapid heartbeat for certain things. Food can trigger it, high activity, social anxiety and caffeine. It's not as bad as before but it still happens maybe 2 or 3 times a week. No more panic attacks! YAY! No more paranoid feelings when I am out. The depression is much better. I find myself enjoying life more. I am socializing again and doing more of my hobbies. My menses come once every two months. I am getting more tired lately and extra unmotivated to get things done. I don't know if it is related but before I could multitask and wake up early but now it feels impossible to get out of bed. My memory is getting pretty crappy. The short term memory is bad. I repeat things and lose things that are right in front of me. Everyday is a struggle. Can't remember what I am studying and my textbook is a puzzle to me. I will be getting a brain MRI in a week to figure out why I am having headaches every night and the memory problems. THE STRUGGLE IS REALLLL lol hmmm.. weight is still stable. I am eating lots of fast food, takeout and restaurants. I have mad sugar cravings. Still get faint often.. The nurse says I have low blood pressure so i guess that's why I will eat a cookie then crave another piece of chocolate. SIGH I hope this won't make me gain weight once my hormones regulate.. I have absolutely no motivation to eat healthy and go workout or be productive versus before surgery I was working, going to school, eating super healthy and working out. Now I have to find great effort to do simple things. My bones still hurt, I tried to squat and heard my knees crack and pop and it hasnt stopped cracking ever since so I guess no squats for me. lol I will probably get a fat ass from eating all these carbs i'm inhaling anyway. The hairy-ness is sooo much better. This guy in my class said he hates hairy arms and asked to look at mines and said I had nice hairless arms. HA! He should have seen me a year ago. I was a furry hamster... But yeah I shaved my whole body and the hair growth is much thinner and almost blonde so that is very good progress. The acne is better as you saw in my last video.. But I still get pimples here and there so I still feel paranoid about that. The hair on my head is filling up nicely. Just got a fresh cut and now my hair feels so soft! Okay there's so more stuff but I don't remember so I will post a better blog next time. I am a little distracted right now =] Here's some pics of my haircut and progress pic!
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| Loving this hair. I did not change my color this is a box color from walgreens =] |
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| Recovery is a beautiful roller coaster. Hello dimple, never thought I would see you again. |
Friday, August 30, 2013
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
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
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/
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/
Wednesday, May 8, 2013
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..
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.
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!
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.
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.
Friday, April 19, 2013
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:
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.
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
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 |
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