Onto more recent things: I've moved home (much to my chagrin admittedly), tried a bit of physical therapy for "core weakness" and have ultimately been diagnosed with fibromyalgia. That's right! It's official. I have a word for my neverending myriad of symptoms. Much like Cushing's, about every detail in my little pamphlet sounds like me and my aching body. I'm grateful to the knowledgeable rheumatologist who took me seriously. When you go through the slew of doctors I have, you start to realize that you're often at a loss between the skeptics or the ones that just don't know what to tell you. Now I'm faced with trying new medications along with other things I already do. There is one that gets good reviews from friends, but we'll see if I can get my insurance to pay for it. I'm still paying medical bills from Eau Claire! I did manage to just get hired at the gym by my house. It's almost in our backyard. This means free usage of the pool, which is the kind of exercise I'm the most capable of doing. It's with kids, which is a bonus. I'm easing into it slow. I'd like a second job, although getting there would be harder. I continue to struggle with my need for independence.
Instead of getting into all that, I'll switch gears to what has really been tugging on my heartstrings lately. Anyone who has ever dealt with illness, especially an "invisible illness" or two, has to put up with asinine comments sometimes. Even well-meaning ones from loved ones. I don't write these posts to accuse anyone of being harsh as I know all too well that social communication with others isn't that simple. I may sound like a broken record player, too. I'd say my biggest fight has definitely become being polite versus taking care of myself. I tend to hold a strong desire to be courteous, which is very problematic when your body says "no". No, you can't eat lunch in the presence of others without getting some sort of digestive cramp. No, you can't walk that far without regretting it dearly. No, you can't lift that. No, you're not allowed to keep up that smile all the time. No, you can't hide it. It can seem like a world of "no". I don't enjoy putting my problems on others. I don't like bothering anyone. I get extremely frustrated when I can't seem to handle things that used to seem so easy. It bares repeating that my "cure" was not a panacea. They can't fully explain me.
I actually have some science to back this up with today. I'll post the link below. Some recent research on post-op Cushing's patients has tried to determine why most complain of persistent health issues despite being free of the original disease itself. I was surprised to see such a study. I would wholeheartedly volunteer for such a thing. It's desperately needed in the world I've come to know. Don't get me started on body-shaming either, because that's a real problem in our society as a whole. You're either too fat or too skinny and health conditions or genes are of no consequence. I found this old picture from Spring 2011 when the physical manifestations were starting to take hold of me. Another photo comparison for your viewing pleasure alongside my graduation photo as of Spring 2014. The hormones in my body did that and nothing else. Anyway, it's easy to drive that point home. It's a different story when no one can see it on the outside.
Sometimes I think wow, if they think I seem like I'm bad now, imagine what they'd think if they could see me when I'm alone... and that's the rub. No one can literally see how hard I truly try to act as normal as humanly possible. This is obviously more hurtful in a situation with family and/or friends. Most of the time, I can brush off what an acquaintance or stranger says if they don't inherently know anything in the first place. I don't expect that. It's when I'm told by those closest to me that I'm not working hard enough or that I should better mask how I feel. Does it sound terrible when I write it? That's unfortunately the point I hope I'm making. I'm sorry, I am. I hear about this all the time on chronic illness forums. How the sick apologize for being sick and say "I'm fine" constantly in an attempt to appear fine. This is an ideology that no person can or should have to muster forever. On the other hand, I'm prideful and will continue to live as best as I can on my own terms. There's no happiness in doing nothing with myself. I'm still 28 and young at heart. I honestly don't need any more criticism than I give myself. I notice when I've snapped. That's usually when I choose to walk away and compose myself if I must. There's only so much I can do about it.
