WOW So my mom told me a few weeks ago that she has a cousin named Mai in Vietnam who had an adrenal tumor. I was in disbelief since this is supposedly a "rare" tumor but someone in my bloodline has one too. I was curious to know more so I asked for my mom's cousins contact and wrote to her. She then responds to me a week later to confirm that she did indeed have a adrenal tumor. Due to the language barrier it was hard to communicate but from what She told me she did not have Cushing's Syndome but another syndrome called Pheocromocytoma Syndrome. Her first surgery was unsuccessful but her second time was a success because they removed the whole gland with tumor. Ans she does not have to take Steroids since it is not like Adrenal insuffiency.. It was very hard to think that we have a connection. Upon discovering this crazy crazy revelation, Mai mentions that her cousin (Nancee) from California also has an adrenal tumor and Cushing's Syndrome and was diagnosed this year and had her surgery in April... What.... Another distant relative from my mom's side has an adrenal tumor AND Cushing's?? This is so hard to believe yet an amazing discovery.. I then was more curious to speak to Nancee and waited to get into contact with her.
Another week passes by and Nancee responds. She also confirms that she has an adrenal tumor and Cushing's syndrome. She is 42 and has had Cushings for about 6 years and had her surgery this April. Her symptoms are classic CD symptoms much like mines and now in recovery. Just like ours, her recovery is rough mostly with the depression and body pain. We then relate to our bad experiences with most doctors and endos who have not treated adrenal patients and are usually baffled by our cases.
I just can't seem to put together this fact that two of my distant relatives had the adrenal tumors and all this time I believed that it was a rare tumor that only affects a 2 out of a million people. We know that not all families get Adrenal/ Pit tumors or have CD but what about the ones that do? What is the connection? Why do endos, text books and online research claim that Cushing's is an isolated disease when now there is evidence that it does happen to family members. Just like the other story I posted about the brother and sister who both had CD? Now It's more evidence to support this theory and for us to believe that Cushing's is not isolated and very much prevalent.
FORGET WHAT THE DOCTORS, INTERNET AND TEXTBOOKS TELL YOU. How is this possible??? I will try to investigate.
Showing posts with label doctor. Show all posts
Showing posts with label doctor. Show all posts
Tuesday, September 9, 2014
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.
 |
| 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.
 |
| 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.
 |
| ^Recognize the symptoms of a crisis^ |
Friday, May 23, 2014
My Sister and I were Diagnosed With Cushing's: MALE Cushing's patient
 |
| Meet Gabriel |
The year was 2007 I was age 16 I
woke up like any other day went and played some games with my friends. That
night, something happened. It began with a small pain in my side that grew
stronger and stronger we went to the hospital thinking it was appendicitis.
It wasn't after a few tests and the pain not going away they (doctors) were
stumped as to what it was. I stayed in the hospital for about three weeks getting
tests done and nothing was found the pain stayed the only thing that was
wrong was my level of cortisol was slightly elevated.
A few months went by and many doctor visits
later nothing was concluded. Doctors were doing random strange tests and
nothing. One doctor wanted to start treating me for Addison’s disease which
is the opposite for Cushings but they were on the right tracks. About a year went
by and test after test being negative I was diagnosed with Fibromyalgia my
body was exhausted and my mind was numb. After a year of testing to be told
nothing's wrong really made me sick. But like always, I moved on from it. I
rolled with it and I was treated for fibromyalgia with the help of sleep aid
and the knowledge of certain things that can trigger intense pain episodes.
Around the year of 2009 my sister was diagnosed
with a brain aneurism and had surgery. The doctors who were doing her tests
noticed a small link between mine and her results .She recovered from her
surgery. And began seeing an endocrinologist after a few months of testing
she was diagnosed with Cushings. During this time of her surgery and testings
I was trying to finish highschool and start college. The year was now 2011 I
was living my life with fybromyalgia but I began getting sick I remember
having an adrenaline rush and nearly passing out because of it something
wasn't right we were for sure of it. I began seeing my primary doctor letting
him know what was happening. I had weight gain, low immune system, blackouts
and pain. The doctor’s response was I was depressed. Cool story right.
|
I sucked it up and dealt with it for another year. My
sister was diagnosed with Cushing’s and my parents noticed we had similar
symptoms and started and put two and two together. I made an appointment with
my sister’s endocrinologist and she noticed right away that something was
wrong. For me, I felt joy that someone was going to help. She noticed the
straie on my neck and underarms and jotted down my symptoms which included bone
pain, muscle weakness, excessive urination, thirst, fatigue, headaches, thin
skin, and bruising. I was text book
Cushing’s. They immediately started
testing me for Cushing’s. My first urine test was the worst they have ever
seen. My cortisol was sky high at a level over 70. Other family complications
that happened through the year put my treatment on hold. Meanwhile my sister
was able to participate in a cushings study with a medication that was new to
the market called Signifor, it was a daily injection that had the chances of
shrinking and stopping the growth of the tumor. After a year, her results were great;
she lost weight and looked healthy. I began going back to the doctor and had
more testing. My cortisol was really high around 60s. The levels made my body
constantly tired and sent my body into over drive. I did an MRI and Dxa scan. They
stuck a tube into my brain to see where the leak on the pituitary is. 3 months
later my results came back and the conclusion reached was that I had Cushings
Disease. I had multiple tumors but none were visible. That was why my body was
shooting out cortisol. My life flashed before my eyes. Years and years of waiting,
crying, and testing I finally had my answer. I got into the case study for CD.
I was the only guy
in my state to be diagnosed with CD at the age of 22 and my sister 19. We were
the talk of the town. Unfortunately testing requirements were very complicated
and I decided not to do the study and instead go for the medications. It took a
few months to get the medications since they were new and pricey. It was okay
to wait since I’ve been waiting for years. After 7 weeks I got my first order
of Signifor. I began taking the injections. The first injection made me vomit
and I continued to vomit after for two weeks. One morning I woke up smiling, I
no longer felt a lot pain in my body and my mind felt clear. I was on the road to recovery. After 2 months
of taking the medication I feel great. My mind is right; I still have pain for fibromyalgia.
I had my first adrenaline rush and didn’t pass out. My mental status is good I
have always stayed positive despite what has happened. I keep my mind away from
the depression. Now life is falling into place. The next thing I need to worry
about is what to do in life without wondering if tomorrow will be my last day
on this earth.
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!
Friday, February 28, 2014
Prayers For My Friend
During the time I was sick, I heard alot of false misconceptions about my sickness. I was told I was fat, lazy, and moody. Just because I wanted to be that way. I was told maybe I should be healthier. I was told maybe my dogs gave me Cushing's. Also, I could just be stressed. I was told I that I am being tested by God. All these misconceptions made me feel I must have done something wrong to get myself this sick. Oh and this one is my favorite, "you're asian, you don't get Cushing's or tumors because those are Caucasian diseases." Could you imagine how crazy that sounds?
So I just want to set the record straight that it was none of the above that caused my illness. Cushing's is a abnormal mutation of the adrenal gland. It could have been any kind of mutation anywhere in my body but it was my adrenal gland. So that's that. The one that peeved me the most was the stereotype that asians don't get Cushing's. The reason I made this blog was to raise awareness for anyone who will stumble upon this, a cushing's patient, but I also made this to give voice that asians can get Cushing Syndrome/ disease. Or anyone else; a caucasion, latino, african, indian person...
Recently I was approached by a young lady from Vietnam named Nga Do. She emailed me asking for some advice because she thinks she has Cushing's but the doctor cannot confirm the source that is causing her Cushings. All they are telling her is that she has Pseudo-Cushings but no explanation. I am deeply affected that this girl cannot get an explanation for all of her symptoms. Also for the fact that we are both from the same country, it hurts that I cannot do more for her than to give her advice and pray for her. So I am posting this entry today for my friend Nga. With her consent I am sharing her story. I saw her more recent picture and it was almost like seeing my reflection in the mirror during the time I was sick too. Nga, I know you will get better and I will be here for you whenever you need to talk. Thank you guys.
So I just want to set the record straight that it was none of the above that caused my illness. Cushing's is a abnormal mutation of the adrenal gland. It could have been any kind of mutation anywhere in my body but it was my adrenal gland. So that's that. The one that peeved me the most was the stereotype that asians don't get Cushing's. The reason I made this blog was to raise awareness for anyone who will stumble upon this, a cushing's patient, but I also made this to give voice that asians can get Cushing Syndrome/ disease. Or anyone else; a caucasion, latino, african, indian person...
Recently I was approached by a young lady from Vietnam named Nga Do. She emailed me asking for some advice because she thinks she has Cushing's but the doctor cannot confirm the source that is causing her Cushings. All they are telling her is that she has Pseudo-Cushings but no explanation. I am deeply affected that this girl cannot get an explanation for all of her symptoms. Also for the fact that we are both from the same country, it hurts that I cannot do more for her than to give her advice and pray for her. So I am posting this entry today for my friend Nga. With her consent I am sharing her story. I saw her more recent picture and it was almost like seeing my reflection in the mirror during the time I was sick too. Nga, I know you will get better and I will be here for you whenever you need to talk. Thank you guys.
 |
| I ask that we can help pray for her to find an answer and have the best health she deserves. |
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
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