The other day I talked with my surgeon and doctors about how my symptoms are still persistent and they told me in most cases it is always a delayed recovery. They say most symptoms will have a significant improvement after 6-12 months. That doesn't sound too bad from a normal perspective, but having to live with it everyday makes it hard to tell if you're getting better, then when it gets real bad you just feel like it's never going away. From what I read on researching this illness, most patients go undiagnosed, untreated, and unheard for so long then after they have the surgery, they go unheard again. Luckily I have my surgeon who is educating medical students about Cushing's and listens when I complain. He sent me some new endocrine journals and articles about long term studies and evaluation of the disease. It talks about how there needs to be a better way to improve the recovery process because it is tedious for the patient and often after the surgery, the patient is expected to be "cured" however they have to deal with all the difficulties of recovering themselves. the other study talks about all the issues that come with the recovery and how symptoms improve. there's more interesting things discussed so I will post it up. In my opinion there definitely needs to be more support for Cushies after surgery from the Medical care that may help them feel as comfortable as possible. Maybe requiring more followups, requirements for psychiatric assistance, and some kind of better booklet that tells everyone what to expect after because it just seems like every person I've spoken to were unprepared for the long road after surgery. Oh yeah they totally need to update their booklet for symptoms!!
I told my doc that I use to have dark orange tinted hands that even my bf noticed. The doc told me that only pituitary patients get the orange hands and not the adrenal patients... How is that possible? well it is the same illness, just different area of cause but idk doctor, my hands are not tang tinted anymore post surgery, just believe me and take note please... I did read somewhere that another adrenal patient had orange hands so it has to be a real symptom... I told them how tired I've been feeling and asked if it's related to the blood test and they say "possibly, but we are not sure". No disease or syndrome is "one size fit all" because some patients may experience much different symptoms than others but it is all real and needs to be heard. This disease is hard to understand but we need more help to unravel this mystery! Ahh this sucks.. I tried to post up the endocrine articles but it can't be shared and you need a membership to access these files.. Ok I guess i'll just put a link to a story about a woman named Shannon. Her story is another one that gives me strength, you gotta read it till the very end.
http://cushingsdiseasestories.com/
Friday, July 5, 2013
Thursday, June 20, 2013
Things Not to Say to A Sick Person
The other day my sister and I were having a discussion and she told me that somebody who she knows-- let's call her Suzie (I'm trying to keep it anonymous) suffers from a behavior disorder, and one day Suzie told my sister about her condition to explain why she is the way she is and she cannot help the way she acts and feels. She said that the disorder takes control of her thinking and she takes medication to feel stable because she tends to have anger issues and a lot of misunderstandings due to her condition. Well my sister listened to everything Suzie had to say and my sister then said "I'm sorry I understand and know how you feel" then Suzie got really mad and angrily responded " How would you understand or know how I feel?". Of course my sister apologized again for it and tries not to say anything that could be misconstrued to Suzie again.
My sister then later came and talked to me and told me what had happened with her and Suzie. I then told her that the saying " I know how you feel" or "I understand" is my trigger too lol I don't know why but I guess a healthy person cannot fathom at all what a sick person feels or goes through on the daily and so they cannot say those kinds of things. I know that it comes from a place of sympathy and empathy but In my opinion the sick person wants to just talk and let out some steam from their condition and what they really want is just a lending ear from someone who cares. So my sister asked me what can she say or cannot say to a sick person. And I told her, The sick person doesn't want any kind of advice or suggestions so don't feel the need to give any tips unless they ask for it.
For example: you shouldn't say, "why don't you try (blank) it'll make you feel better" because the sick person would think "well you think that if I did such and such I would suddenly be healthy again?!"
then you say"things happen for a reason" the sick person would think "so are you saying I got sick and got tortured mentally and physically for some kind of reason?"
oh and my #1 favorite is "You must feel (blank)" --why is that the worst thing to say to someone? because sick or healthy, nobody likes to be told how they are feeling. nobody knows how they feel except for the person living it. I would never want anyone to have this illness but if you can walk a mile in my shoes, then you can say that or whatever you want.
lol so I was reading other blogs from other chicks with chronic illnesses and found some funny quotes and lists of things not to say to a sick person. I'll post it up. Well thanks for reading and remember not to say these things:
My sister then later came and talked to me and told me what had happened with her and Suzie. I then told her that the saying " I know how you feel" or "I understand" is my trigger too lol I don't know why but I guess a healthy person cannot fathom at all what a sick person feels or goes through on the daily and so they cannot say those kinds of things. I know that it comes from a place of sympathy and empathy but In my opinion the sick person wants to just talk and let out some steam from their condition and what they really want is just a lending ear from someone who cares. So my sister asked me what can she say or cannot say to a sick person. And I told her, The sick person doesn't want any kind of advice or suggestions so don't feel the need to give any tips unless they ask for it.
For example: you shouldn't say, "why don't you try (blank) it'll make you feel better" because the sick person would think "well you think that if I did such and such I would suddenly be healthy again?!"
then you say"things happen for a reason" the sick person would think "so are you saying I got sick and got tortured mentally and physically for some kind of reason?"
oh and my #1 favorite is "You must feel (blank)" --why is that the worst thing to say to someone? because sick or healthy, nobody likes to be told how they are feeling. nobody knows how they feel except for the person living it. I would never want anyone to have this illness but if you can walk a mile in my shoes, then you can say that or whatever you want.
lol so I was reading other blogs from other chicks with chronic illnesses and found some funny quotes and lists of things not to say to a sick person. I'll post it up. Well thanks for reading and remember not to say these things:
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(I wouldn't wish what I have on anyone, but unless you get it, you just don't get it)  |
Wednesday, June 19, 2013
Oh Bloody Heck I'm still Young!
Today I went to get blood work done yay my favee!! My docs instructed for me to not take my meds for 24-48 hrs. We will see the results next week if lazy lefty decided to wake up yet. But omg When will I ever get over the fear of needles?! The guy who took my blood had trouble finding a good vein to stick the needle in and he said I have dainty veins. umm dainty?? lol I just told him to please please hurry up and get it over with. Anyways I was told to avoid stressful activities since I won't have the cortisol in my body to cope. but a bloodtest in my book is a stressful activity has now become my regular friend.
I mentioned some time ago my struggles of coping and fearing the Cushing's will return. I don't want to go on anti-depressants or anxiety meds. So I went and talked to a behavior counselor and he told me it is often normal for an ill patient to feel that way though they are surgically "fixed". It's kind of hard to feel fixed when the symptoms are still there. Though my surgeon still reminds me that I am more than good lol Some people think it's just simple surgery and the problem will be gone which is not the case with the Cushing's patient. He did say that it is very rare for a young person to become this ill and usually it happens later on in life when people are wiser and can cope with a big stressor like illness, surgery, and death. He explained I'm still young and I was suppose to see my elders get sick first instead it was vice versa and he told me that this major event was equal to losing a limb or death of a family member. His advice was that I need to accept that it just happened and I did nothing wrong And like everyone else, he advised me to only do things that makes me feel good from now on. Yes I agree! Life is too short! I was already trying to do that but it is definitely easier to navigate and follow instructions from someone with this kind of insight. We talked for a long time and it did help me feel better even though some symptoms are still present. I am still learning about what I can handle. This week due to low meds: My joints are having sharp jolts of pain but manageable and the dry itchy skin is crazy, not manageable! I've been feeling more tired and have been sleeping a lot. I am so happy that I can take full naps now! Excitement due to good or bad stress leaves me feeling exhausted. But that is good I can take more naps! lol I cut myself chopping an apple and it hurt like hell! I have a headache but not as extreme as usual. The moments of mental clarity are still improving but improving ever so slowly. Thankfully the people in my bubble aren't pressuring me to recover quickly even though I have wild expectations for myself. As the smart Dr. Seuss once said," those who mind don't matter and those who matter don't mind." =]
I mentioned some time ago my struggles of coping and fearing the Cushing's will return. I don't want to go on anti-depressants or anxiety meds. So I went and talked to a behavior counselor and he told me it is often normal for an ill patient to feel that way though they are surgically "fixed". It's kind of hard to feel fixed when the symptoms are still there. Though my surgeon still reminds me that I am more than good lol Some people think it's just simple surgery and the problem will be gone which is not the case with the Cushing's patient. He did say that it is very rare for a young person to become this ill and usually it happens later on in life when people are wiser and can cope with a big stressor like illness, surgery, and death. He explained I'm still young and I was suppose to see my elders get sick first instead it was vice versa and he told me that this major event was equal to losing a limb or death of a family member. His advice was that I need to accept that it just happened and I did nothing wrong And like everyone else, he advised me to only do things that makes me feel good from now on. Yes I agree! Life is too short! I was already trying to do that but it is definitely easier to navigate and follow instructions from someone with this kind of insight. We talked for a long time and it did help me feel better even though some symptoms are still present. I am still learning about what I can handle. This week due to low meds: My joints are having sharp jolts of pain but manageable and the dry itchy skin is crazy, not manageable! I've been feeling more tired and have been sleeping a lot. I am so happy that I can take full naps now! Excitement due to good or bad stress leaves me feeling exhausted. But that is good I can take more naps! lol I cut myself chopping an apple and it hurt like hell! I have a headache but not as extreme as usual. The moments of mental clarity are still improving but improving ever so slowly. Thankfully the people in my bubble aren't pressuring me to recover quickly even though I have wild expectations for myself. As the smart Dr. Seuss once said," those who mind don't matter and those who matter don't mind." =]
Friday, June 7, 2013
Trying to feel "normal"
So it's been 5 weeks since the op and I am trying to feel normal. I don't know what normal means but I still feel strange. I had to return to my normal medication doses because my self experiment was not very successful lol but I am going to try to taper again once I feel okay. The memory is somewhat improving I think? But then again I keep forgetting to take my meds at the right time.. -__- My symptoms are still persistent but the good news is that I have a few moments of mental clarity but then the "Cushing's" feelings return. I might feel like a can breathe and relaxed for about 30 minutes to an hour a day usually when I first wake up and take the highest dose of meds.Then it starts to go downhill til I take the next dose at 3pm. The night time is the worst because that's when the weird fatigue, headache, nausea and anxiety etc feelings are the strongest. I can't make it go away and I am now having more nightmares of still being sick. It's hard to believe that I am fixed when I feel so blehhh. I don't know if I am coping very well but I feel traumatized by what has happened. I talked to some recovered women and they told me that anti-depressants helped them through the recovery process but I don't think I want to go that route. I believe that I am prone to depression because of the Cushing's and feeling physically blehh during this time but I am not depressed. So I am thinking of alternative therapy to help me cope. I find that walking a bit during the daytime helps and also trying to do more things I normally did when I was healthy though it's more of a challenge these days. I am still trying to find the right balance. I hope one day I can get to the point of feeling like myself again and being completely healthy and not having to think of Cushing's anymore.
To keep track of my progress and to remind myself that I am improving, I keep a daily log of improvements on the symptoms and also take weekly pictures. I don't feel or see a big improvement but family have commented that my moonface has been shrinking. My sandals are loose on me, tummy isn't as bloated and my glasses fit my face again!! lol prior to surgery my face got so swollen and big that my glasses were too tight haha I guess that is a good indicator that I am headed in the right direction. Though I may look a bit better, I still feel all sorts of weird inside. But I will continue to move forward the best I know how. Here are the photos from before op to post op. I tried to be consistent with the photos. It's noticeable how pre-op all the pics looked so dark and gloomy and my eyes are so tired and sad looking even though I was smiling and after surgery it's brighter and I kind of look happier. reminds me of that blue song I'm blue da ba dee da ba daa lol
To keep track of my progress and to remind myself that I am improving, I keep a daily log of improvements on the symptoms and also take weekly pictures. I don't feel or see a big improvement but family have commented that my moonface has been shrinking. My sandals are loose on me, tummy isn't as bloated and my glasses fit my face again!! lol prior to surgery my face got so swollen and big that my glasses were too tight haha I guess that is a good indicator that I am headed in the right direction. Though I may look a bit better, I still feel all sorts of weird inside. But I will continue to move forward the best I know how. Here are the photos from before op to post op. I tried to be consistent with the photos. It's noticeable how pre-op all the pics looked so dark and gloomy and my eyes are so tired and sad looking even though I was smiling and after surgery it's brighter and I kind of look happier. reminds me of that blue song I'm blue da ba dee da ba daa lol
Friday, May 24, 2013
Feeling Better? A Good Surprise
Alright I'll admit I've been bad since my last entry.. I got curious to how I would do on a
lower dose of steroids and self experimented. I took 27mg umm
let's just say I didn't do too well. Yes I'm stubborn lol, although I'm not
dying so I think I can handle it. I'll just keep it that way til the next visit to the docs which is in a month or so? Supposedly the magic number to
stimulate the adrenal gland is 12-15 mg. I still have a long way to
taper down... I think I might be feeling better? I see some improvement
on some things and less in others. I guess I need to feel or see a huge
difference to believe it but I am now livin life in the slow lane lol. We had some unexpected house guests this week.. lol
Ever since the operation I haven't been feeling well or keeping track of the days going by. Yesterday there was a knock on the door I thought it was some delievery package and it was my best gal Jessica holding some beautiful flowers. I forgot we planned months ago that she would come back one last time from Maryland to visit and I even wrote it down on my memo. Blame it on the short term memory! lol.. This will be the last time I see her for a while since she's in the airforce and will be relocating to Korea then Japan. I wanted to make a little memorabilia collage for her and found some old pictures of us through the years. Looking back at old photos is funny, I looked so dorky in the homecoming picture and what was I thinking going so blonde!! lol x]
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| Vankey, Fatty & ^^Tiny |
Ever since the operation I haven't been feeling well or keeping track of the days going by. Yesterday there was a knock on the door I thought it was some delievery package and it was my best gal Jessica holding some beautiful flowers. I forgot we planned months ago that she would come back one last time from Maryland to visit and I even wrote it down on my memo. Blame it on the short term memory! lol.. This will be the last time I see her for a while since she's in the airforce and will be relocating to Korea then Japan. I wanted to make a little memorabilia collage for her and found some old pictures of us through the years. Looking back at old photos is funny, I looked so dorky in the homecoming picture and what was I thinking going so blonde!! lol x]
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2004 |
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2006  
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Friday, May 17, 2013
Recovery
The first thing I am being asked these days is how I'm feeling. First thing I want to say is that I feel grateful to have gotten the tumor out and to be living and breathing. Second thing is... I feel like crap and recovery sucks. I'm sorry to disappoint those who are waiting for me to get better so we can catch up and enjoy our lives together but this process may take a while... I feel the same but worse. The Cushing's syndrome is gone but that doesn't mean that I am back to my normal self. Not yet atleast. I still have to deal with the aftermath of what this illness has done to my body and mind throughout the years that I've been living with it. As you can see my headline use to say "from diagnosis to recovery", but I now added "cure". Silly me for thinking being in recovery is the same as being cured. They are two very different things and I am no where near being or feeling cured. Being cured I would say is when my remaining adrenal glad wakes up and starts producing the hormones it should then sends the message to my pituitary gland to balance more hormones so I can function normally physically and mentally. Mainly cortisol is what my body needs. Funny how it created so much problems and imbalances in my body --got rid of it, but now I am struggling to get some of it back in order to function and live. I am barely learning what this recovery process really is.
Okay so how am I really feeling? Like a punching bag. I feel as if I still have Cushing's with all the symptoms but magnified. Now that I don't have cortisol, I don't have any anti-inflammation help so I feel every ache and pain in my body. To top things off I don't know if it's because of the chemical imbalances in my brain or the medication i'm taking but I am experiencing extremely poor memory, concentration and confusion. I am struggling to write this post I keep looking back to reread because I forgot what the previous sentence I wrote is about. I find myself standing around forgetting what I was going to do, blanking out, fumbling and switching words during conversation, and last night thinking the my phone was the remote. lol that is funny but not really when the forgetful person is you. You know the feeling of struggling to look for your keys before leaving the house, you look everywhere and in the end it was in your pocket or on the countertop.. Well that is how I feel all day lol. The alarming thing is that it is appearing to gradually get worse ever since the surgery. I seem to not comprehend anything people are saying and my short term memory is terrible so forgive me if this entry sounds repetitive or not make sense. I see muffin laughing at the tv but I just feel confused because I can't follow the plot. I asked him to rate my cognitive functions from when we first met and he told me I use to be so sharp and was a 10 and now I am a 6!! I need to start playing suduko and crosswords!! When I wake up, as one of my cushie friend describes is feeling like I am waking up from the dead no joke. My limbs are aching and I had no idea I had arm pains until now. I am so itchy from the dry skin and my hair is falling out double the amount. I've been writing down all of my symptoms and concerns on a note pad and talked to my docs. They say it's all normal and its usual symptoms of cortisol withdrawal. I have not experienced the vomiting and shakes but that is probably because I am on 30 mg of hydrocortisone daily. My body is not accustomed to that less of an amount but it will and gradually I will have to work with my docs to slowly taper off the meds each month until lefty wakes up. which could take up to a year. I wanted to try to taper off the meds myself but I read horror stories of adrenal insufficiency or crisis where the women end up in the ER. I do not want to end up back there! Another girl I talked to said she self tapered and was about to pass out before her roomate found her. I may be stubborn and like to self experiment but I do not want to go back to hospital so I will take my meds at correct doses and time =]. I just hope I don't forget!
I also made a list of the good things. The moonface has been shrinking, I'll post up some before and after pics soon. My family members say I am more upbeat. And I have been sleeping ALOT. I can literally close my eyes and take a nap right now. I feel less bloated from not retaining salt. I've lost 5 lbs of like water weight I was retaining and my appetite is feeling normal again. my shoes are loose on me again. My surgeon said my wounds are healing slowly from the surgery but that is expected from cushing's, still they are healing. This recovery process is tricky, my doc says the symptoms of cushings is a lot like the recovery symptoms. I understand why people say it is slow and frustrating.. I also experience chills at night and shooting muscle pains. I also feel my allergies again. Which is a good thing to feel right?
To those of you who want to see me, I'm sorry I cannot be the friend, sister, cousin, daughter, niece I can be right now. As much as I try to push, I cannot physically and mentally make my body recover any faster than it wants. I need to learn that patience is required throughout this whole process. There is no shortcut in looking and feeling healthy. Everyday I am relearning what my body is telling me. Actually i'm learning how to live life again. Mostly I just feel confused but I am trying my best... I use to feel so betrayed by my body but now I need to listen to it. I have nightmares every night about Cushing's returning and fear I will forever be broken. I fear the most that the anxiety, depression, and panic attacks will come back. I want to make sure they are gone for good and never return. I know right now a lot of things are out of whack and that's why I feel the way I do and the prolonged recovery adds to the frustration. But now when I wake, I know things can only get better day by day. I texted my surgeon to thank him for fixing me and he responded "it will take some time and adjusting but rest assured you are fixed-- do everything to remember you are fixed now."
Okay so how am I really feeling? Like a punching bag. I feel as if I still have Cushing's with all the symptoms but magnified. Now that I don't have cortisol, I don't have any anti-inflammation help so I feel every ache and pain in my body. To top things off I don't know if it's because of the chemical imbalances in my brain or the medication i'm taking but I am experiencing extremely poor memory, concentration and confusion. I am struggling to write this post I keep looking back to reread because I forgot what the previous sentence I wrote is about. I find myself standing around forgetting what I was going to do, blanking out, fumbling and switching words during conversation, and last night thinking the my phone was the remote. lol that is funny but not really when the forgetful person is you. You know the feeling of struggling to look for your keys before leaving the house, you look everywhere and in the end it was in your pocket or on the countertop.. Well that is how I feel all day lol. The alarming thing is that it is appearing to gradually get worse ever since the surgery. I seem to not comprehend anything people are saying and my short term memory is terrible so forgive me if this entry sounds repetitive or not make sense. I see muffin laughing at the tv but I just feel confused because I can't follow the plot. I asked him to rate my cognitive functions from when we first met and he told me I use to be so sharp and was a 10 and now I am a 6!! I need to start playing suduko and crosswords!! When I wake up, as one of my cushie friend describes is feeling like I am waking up from the dead no joke. My limbs are aching and I had no idea I had arm pains until now. I am so itchy from the dry skin and my hair is falling out double the amount. I've been writing down all of my symptoms and concerns on a note pad and talked to my docs. They say it's all normal and its usual symptoms of cortisol withdrawal. I have not experienced the vomiting and shakes but that is probably because I am on 30 mg of hydrocortisone daily. My body is not accustomed to that less of an amount but it will and gradually I will have to work with my docs to slowly taper off the meds each month until lefty wakes up. which could take up to a year. I wanted to try to taper off the meds myself but I read horror stories of adrenal insufficiency or crisis where the women end up in the ER. I do not want to end up back there! Another girl I talked to said she self tapered and was about to pass out before her roomate found her. I may be stubborn and like to self experiment but I do not want to go back to hospital so I will take my meds at correct doses and time =]. I just hope I don't forget!
I also made a list of the good things. The moonface has been shrinking, I'll post up some before and after pics soon. My family members say I am more upbeat. And I have been sleeping ALOT. I can literally close my eyes and take a nap right now. I feel less bloated from not retaining salt. I've lost 5 lbs of like water weight I was retaining and my appetite is feeling normal again. my shoes are loose on me again. My surgeon said my wounds are healing slowly from the surgery but that is expected from cushing's, still they are healing. This recovery process is tricky, my doc says the symptoms of cushings is a lot like the recovery symptoms. I understand why people say it is slow and frustrating.. I also experience chills at night and shooting muscle pains. I also feel my allergies again. Which is a good thing to feel right?
To those of you who want to see me, I'm sorry I cannot be the friend, sister, cousin, daughter, niece I can be right now. As much as I try to push, I cannot physically and mentally make my body recover any faster than it wants. I need to learn that patience is required throughout this whole process. There is no shortcut in looking and feeling healthy. Everyday I am relearning what my body is telling me. Actually i'm learning how to live life again. Mostly I just feel confused but I am trying my best... I use to feel so betrayed by my body but now I need to listen to it. I have nightmares every night about Cushing's returning and fear I will forever be broken. I fear the most that the anxiety, depression, and panic attacks will come back. I want to make sure they are gone for good and never return. I know right now a lot of things are out of whack and that's why I feel the way I do and the prolonged recovery adds to the frustration. But now when I wake, I know things can only get better day by day. I texted my surgeon to thank him for fixing me and he responded "it will take some time and adjusting but rest assured you are fixed-- do everything to remember you are fixed now."
Thursday, May 16, 2013
Strange Disease, free surgery, bad test subject
During the time we were looking for surgeons, another recovered friend refer me to contact The National Institute Health. NIH has been studying Cushing's disease and syndrome and offer free surgery
to patients who fit their protocol. I sent in my medical records weeks
ago and the other day they contacted me accepting me as a case
study. I would love to help others learn more about this disease and
what causes it, but I already had the operation so I had to decline. I read up on the study and
you get subjected to different tests for a week prior to surgery, I already didn't do
well with the bloodtests and catheter experiences at the hospital. I
would have been a terrible test subject! lol But it is good to know there is a place a Cushing's
patient can go if they cannot afford surgery and I hope they can find
the cause of this strange disease. I am working on a recovery entry and will post before/after pics soon! Here's a pic of my doggie showing his night time support <3
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| One day soon buddy... |
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