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September 5, 2013 / Ang


Yesterday I wrote a facebook status: “I’m almost afraid to admit that I’m scared.”

I had a friend try to be reassuring about it and it was sweet, I love her dearly. She is always such a positive influence. She’s a part of the Life is Good movement. I forget her title there, Playmaker? Anyway, she’s sweet and wonderful and does so much for other people and she tried to be reassuring. I didn’t want to explain on facebook what was really going on, I just wanted to get that sentiment out. So when she told me, “But once you do that, you can get to the bottom of why you feel it and it won’t control the way it has before.” I decided to let her know that I’m feeling a little bit in over my head medically right now and the fear accomplishes nothing other than making me look silly. I feel as though, on a medical front at least, all I can do is keep pushing myself to get past the fear.

That’s not everything I’m afraid of though, and I’m one hundred percent serious when I tell you that I’m scared to admit what’s bothering me. I was even more terrified of it yesterday, but I think I made some vague process with some of my fears last night.

On the medical front: I’m so scared of just being a mystery forever. Or being REALLY sick. I don’t know what’s going on with me and I’m not used to being at a point with my doctors where I can no longer be an instrumental voice.

Do you remember how I mentioned having to get a bunch of blood work drawn and what a fiasco it was? Well, I got a call from my doctor here about it. My cortisol levels were elevated, and as a result he wanted to do an ACTH test and he wanted me to get an MRI of my adrenal glands. I don’t know what’s going on with ANY of this. And at the moment, for once, I think I might be a little okay with that. I tried to educate myself about what could be causing excessive cortisol and most of the answers I found were scary. So I’m forcing myself to live in ignorant bliss until I hear back about my results. I’m a little nervous about the MRI either way. I don’t want it to be a tumor (which is what the internet suggests causes elevated cortisol) but at the same time I’m almost afraid of the tests coming back negative. What’s causing my problems if not the typical things? Am I really about to potentially find out about yet another rare condition? And I’m in over my head with this. It’s not like I can go, “Wait. Can we evaluate for this maybe?” Literally the only input I can come up with about this is, “Could whatever is causing the excess cortisol be why I’m getting those twinges of pain near the bottoms of my ribs and in my back that don’t seem digestion related?” Additionally, “If you can’t figure this out is there an endocrinologist I could see?”

That’s not who I am. I am NOT uneducated and just at a loss. I’m actively involved in managing my own care. I’m the one who knew each time I landed myself in the emergency room with ovarian cysts that I had them and asked to get the ultrasound just to confirm and was really only there for the sake of documentation (to prove the hormone therapies we had been trying weren’t working) and because I REALLY needed something done about the pain. I was doubled over while taking vicodin before the pain was so bad – but I knew what the problem was, I just needed treatment. Now that we’ve finally found the right hormone therapy I can even look at my gyno and say, “I think I may still be throwing cysts sometimes but maybe they’re smaller or fewer? It’s not AS painful, I can handle it. Usually either completely on my own or with Advil or something.. But is this possible?” And I can advocate my usage of the Nuva Ring to my other doctors who question me on it because “it could be causing problems” with, “I’ve been on it for two years and had no immediate side effects. Unless you’re suggesting that I’m just now developing side effects, I don’t think it’s a problem. It’s also the only thing keeping me from being on vicodin for the extreme pain I get with ovarian cysts. I would much rather have estrogen coming into my body regularly than vicodin. So can we please not take it away?”

See what I mean? I know how to handle myself and I know how to talk to doctors. So not knowing what to say and being afraid is just NEW to me. And I’m scared on the GI front too.

I have chronic colitis. My cardiologist started me on Levsin to try to treat the POTS (don’t ask me how), and while it hasn’t had much of an effect on my POTS symptoms it DEFINITELY helps the colitis. It’s wonderful. For a while I felt like a completely normal person aside from following my dietary restrictions. It was beautiful. Then the GI troubles started up again. Not my colitis, but potentially reflux drama. I was having some hardcore reflux symptoms for a while – heartburn every night, nausea with water in the mornings, NO APPETITE, always feeling full. So I went to my PCP and asked her if she would put me on a reflux medication again. She was all for it acknowledging that I seem to make excess acid and it made sense to give me something to prevent the problems that come along with it. A week later I saw another doctor at the office and he actually doubled my reflux medication because I didn’t seem to be responding to treatment. He then asked me to get an ultrasound of my gallbladder done as well, but the ultrasound came back normal. So when he called me about my abnormal blood work and told me that he wanted me to get the ACTH tested and the MRI, I went, “About the ultrasound – I know it came back normal. But I would feel a lot more at ease if we could get a HIDA scan and rule my gallbladder out entirely. Is that possible?” See? Knowing how to handle myself and what to suggest. 

I got the HIDA scan done yesterday. The technician threw me into a panic when I woke up from my VERY brief nap after focusing on my breathing for so long and only having four hours of sleep with the word, “Torsion.” I’m not even kidding you – I think the word itself is why I woke up. It scared the hell out of me to hear him talking about torsion being evident in a test that was completed that morning (without knowing who he was referencing) because when I was 13 I had a massive ovarian cyst with torsion and almost died. So yeah, I was a LITTLE freaked out.

And even if the HIDA scan is normal, I know that I can talk to the GI about being evaluated for gastroparesis. I’m worried that they’re going to ask me to go off of the Levsin as part of my treatment, and that my colitis is going to flare like mad again. I don’t like that it feels like I have to choose. And even if I do have to choose, it feels like the nausea might be the better choice. I don’t think my body can handle getting sick on a daily basis with POTS – I’ll get dehydrated and get even more symptomatic than I’ve been. I don’t want to have to choose what type of sick to be. I just want to not be sick. Is that really too much to ask for? And what if even after going off the Levsin I’m still always feeling full and have nausea? But they decide it’s not GP because if my intestines are ticked off enough they work QUICKLY (as evidenced by missing doses of my Levsin and having to drink Ensure and being sick within an hour), and it’s not the Levsin, and it’s not my gallbladder, what then? What could possibly be wrong with me? I don’t want another mystery diagnosis dammit. And I’m so scared that’s what it would be. The same way I’m scared they won’t know what’s causing the elevated cortisol.

And so – I push through. I put on my brave face and pretend I’m not terrified because I don’t think it’s worth explaining how I feel to my parents, and I’m so worried about sounding like I’m whining to my friends. I don’t want this to be the only thing in my life. My health is not me dammit.

That’s one of the things I’m afraid of too actually. I’m so nervous that the friends who have stuck with me through this, or come back into my life again recently, will realize that this is just too much to deal with. What if I talk too much about what’s going on health-wise because it’s pretty much the only thing eventful going on in my life lately? What if I whine too much on the bad days? What if I just suck as a person and it’s taken way too long for them to notice and it just conveniently happens now?

I am so excited to have my one friend back in my life. We were close before and I was a little lost when we initially distanced ourselves back then. Now that he’s back? I’d rather not chase him away, have him realize that I’m not good enough, etc. And I really feel like there’s a chance that might happen. He’s at school surrounded by tons of healthy (potentially intelligent) girls that share his interests. What if he eventually realizes that although I’m awesome (or so I tell him all the time) I’m a little too broken/damaged/sick? Or he gets bored with me and realizes how much more awesome his other friends are and just disappears again?

I have to be honest. It’s not just fear that he’ll distance himself and I’ll get hurt or something like that. I’m honestly afraid that I let my overthinking get in the way and I say or do something wrong, or worse – I’m the one that pushes him away. He reassured me the other day that it’s not my fault things haven’t really gone well in the relationship department in the past, that I’m not the villain. But when I get scared I get distant, and I’d rather not be the reason someone I care about is hurting.

I guess it’s time to put the brave face on and pretend that everything is fine and I’m not freaking terrified.


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