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:



(I wouldn't wish what I have on anyone, but unless you get it, you just don't get it)

 

 

 

I love pugs

 

 

 

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." =]

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