It's been 441 days since my transphenoidal surgery. My posts have become less and less frequent as I struggle with knowing what to write!
Sure, I could just blog about nonsense or whatever is in my mind that day but this blog is suppose to be about my journey with Cushing's so it doesn't seem right to turn it into a diary/journal of nonsense.
But the truth is, my Cushing's situation hasn't changed much in the last few months. I'm still having doubts about whether or not I'm really cured and still struggling dealing with the aftermath of it all...
Overall my life is good at the moment! I'm nearly done with half of my Masters already and am enjoying myself here in Hong Kong with my family and friends. But some things are still a miss. I can't help but think that something is still wrong with me. Apart from the fact that I'm no longer losing weight, I appear to be starting to put it on again. Not only that, but I'm still sweating excessively and getting ill quite often. In fact, ever since surgery over a year ago, I've had about 6 throat infections!!
I still have bouts of tiredness/lethargy and my blood pressure hasn't resolved itself completely yet.
I'm sure that all this is linked to me being overweight but as I also know that my weight is linked to my Cushing's, so I can't help but think that maybe there's still something there...
I thought it would be funny to use a ham reference for my title, as you guys know I used to smoke and now I'm supposedly "cured" but the more I think and use the word, the less appropriate it feels.
But maybe I'm setting the standard too high? Is it unrealistic for me to expect that my health will return to what it was only a few years ago, before Cushing's turned it upside-down? If you are injured and the wound heals but leaves a scar, are you still cured? What about mental and emotional scars?
Lord knows I have plenty of scars, physical, mental and emotional; but at what point should I give up on their healing and accept them as permanent fixtures in my life? And does accepting them mean defeat or is it part of acceptance/healing?
Sometimes I have trouble differentiating where the Cushing's ends and where I, Stephanie, begin. Not many people will be able to relate to this statement. In fact, I realised that not many people would be able to relate to what I was going through fairly quickly in my Cushing's journey but I guess I still hold out hope that some will. I've been writing a paper on Bipolar Disorder and the psychosocial treatments that patients and their families receive. Families are "educated" about the disease and taught to differentiate when someone is acting Bipolar and when they're just being themselves. Now I'm not in any way suggesting that Cushing's is anything like Bipolar Disorder (even though the two have similar symptoms and are often misdiagnosed as one or the other) however I think that they're on to something there! Our loved ones and the people around us need to be educated and shown how to understand what we're going through so that they can help us and empathise with us.
What I struggle with the most is that now, people think I'm cured therefore what's wrong with me is that I'm overweight and my unhealthy lifestyle is what's causing my other problems (hypertension, frequent illness). But are they right? Maybe they are!? I mean, after all if I lost weight I'm sure my BP and sweating would improve. But I haven't been able to! I'm trying so hard to watch what I eat but I'm always hungry and craving salty foods. Maybe I'm just making excuses for myself and I just need to be stricter? Yet, this is exactly what I (and everyone around me) was telling me for years when my Cushing's was undiagnosed!! It wasn't until they bothered checking my cortisol levels and MRI'ing my brain that they changed their tune about me.
I KNOW I am a strong willed person. I KNOW I am capable of getting things done, after all, I've dieting successfully many times before and I've managed to quit smoking, alcohol and caffeine too. And I never had a problem with my weight before, but the same question remains: Is it the Cushing's or is it ME?
Unfortunately I think that I will never know... Just like I still don't really know when it all started. I suspect it started appearing when I was around 18 but sometimes I think it might even have been there before. But I have no way of knowing and it does me no good to dwell on the past.
Which is also why I don't want to dwell on this question of whether it's me or the Cushing's and just want to move on, but it's not so easy...
I also have cushing and I so agree with educating families about this disease! My entire family and all my friends think I've gone crazy and that I'm making everything up; so much so that when I have surgery (in about 19 days) I'm moving to a new town to have a "fresh start". I have to have brain surgery and still its not a big deal or they dont understand any of it! This sickness has completly changed my entire life! I pray that surgery will cure me lol its been about 6 years I've been sick! I wish you all the best and if you ever need to talk I'd love to :D
ReplyDeleteHow did your surgery go? Are you on the road to recovery yet? I remember I felt absolutely terrible for about a month after the operation. Hope you're well!
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