I think there’s still a part of me that’s hoping my chronic illness will adapt to my life, and not the other way around.
I’ve always had a hard time saying “no” to people and it’s especially hard when they don’t understand the situation, even if I’ll regret it afterwards.
It’s like when the woman called to schedule my Solumedrol infusions. She gave me a date and I suggested a different one.
She guffawed at this. Her comment back to me was, that’s two weeks from now. Why would you want to wait that long?
I’m a grad student, I told her. And that will be when all my work is completed. She said she understood. I think I was also hoping that the longer I put the infusions off, the less I would need them.
While I’m learning my limits, I’m also fighting against them. It’s stupid because I always end up exhausted or flaring. But maybe we need these types of lessons in order to accept the confines of our newly defined lives.
The new “normal”.
My illness isn’t going anywhere. I learn that every time it rears its ugly head. So I need to learn to deal with it.
But in a world full of “normals,” it’s hard to get people to understand that when you ask for a break, you’re not asking for special treatment, but rather, the treatment you deserve.
It’s like people offer band-aids to cover inch-long, gaping wounds.
Sometimes I think that I’ve finally hit the rebellious stage in my life. I didn’t rebel against the parental institution, so why not rebel against the medical one?
“Normal” girls my age carry makeup in makeup bags. You know what I carry in mine? It’s a survival kit of sorts. I have high SPF sunscreen, Tylenol, industrial strength hand sanitizer, and my medication. And in the back of my mind, I prepare for the day when the seemingly “normal” provisions are replaced with more daunting medical paraphernalia.
I hate the word “normal.” It is such a relative term. I think what they call steroids and immunosuppressives and DMARDs (Disease-Modifying Antirheumatic Drugs), should really be called Personality Altering Drugs. Because honestly, that’s what they do. And that’s what, at least my doctor, didn’t tell me about. And I don’t mean to be negative here, but if your illness doesn’t kick your butt, in one way or another, the medication will.
And you know what else?
No drug, no matter how powerful, can protect any of us from the outside world.
This post comes in response to another comment made about my face by my so-called friend. I used to have a lot of respect for this person, but no more. Can’t this person see the look I get on my face when the subject is mentioned? I wouldn’t be surprised by something like this coming from a kid, or maybe even an uninformed adult, but this person is supposed to be my friend. Friends don’t say things like that. And this person has some experience in the medical profession, so whether specific details were shared or not (which they were), I’m pretty sure this person could have figured out why my face looked the way it did without making a point of telling me about it.
This is one of those situations that I really don’t know how to handle. On the one hand, I’m pretty much ready to tell this person to jump on the first train out of my life. On the other hand, I want to try and be amiable. But that’s hard when my insecurities are so blatantly being thrown in my face. And clearly, shockingly, I am pretty sure that this person does not realize they’ve offended me. How that’s possible, I’m not really sure.
Maybe I’m being overly sensitive about this. But this is not the first, nor second, but the third time a comment has been made by the same person. My message to this person - You know, you have an axe to grind with modern medicine (in terms of medication use), go grind it somewhere else. I really don’t want to hear about it!!!