It's late at night, the time when the anxiety I really want my brain to forget about comes to the forefront & won't let go. It's the time when I know if I don't stop thinking about this crap now then I should forget going to bed because the memory of the bad dreams & even more debilitating anxiety I'll feel in the morning won't be worth it.
Before I became really sick I really could control any bad or worrisome thoughts & always move into a happy place before going to sleep. Sometimes I'm almost 100% positive that this current lack of control is part of the disease that's taken over my body. That scares me even more, if this can happen so can many of the other psychological issues they say can happen. My brain has already been affected in ways both Eric & I have been aware of for quite some time. I'm aware of some other, newer things that are hard to convince him or anyone else is happening now although I can feel it.
So my question becomes, at what point does what I know & can feel matter the most? When is it this expertise that grants me the right to determine certain options for my health care, when I not only feel how I feel but have come to know more about my illnesses than most of my Dr.'s do?
And what I think "mattering" is at the heart of what torments me right now. You see, getting sick goes something like this:
- You start to realize you're sick & seek a Dr.'s help
- What's wrong doesn't immediately jump out so the Dr starts ordering tests & referring you to specialists
- You start getting placed on meds for long term & short term issues
- You have to start seeing certain Dr.s & specialists on a regular basis because of all of the meds you are now on
- You find yourself sobbing on the bathroom floor because you've just realized you've given away certain rights & parts of your life to people who don't care about you after 4pm on a Friday or when they decide to take a few days off without updating your meds first. This is also the time you realize you're sick & you'll spend the REST OF YOUR LIFE relying on other people and that means that your plans are no longer dictated by how you feel but also whether or not the Dr took care of the meds you needed to get by. And then there's the worst part of it all, this is also the time you find out that your Dr will make decisions about your plan for treatment without your input or even telling you him/herself. Instead the Dr will make a decision & write it in your note which some office person will read to you & there is not anyone but the Dr who will be able to change that decision!
This past Thursday & Friday I went through another ordeal of the "they have control over you" with an added bonus of the Office Manager treating me with disdain, disrespect & outright lying to me from one sentence to the next like I couldn't possibly be intelligent enough to realize it. Eric had to take over & finally got the Dr on the phone after over an hour of us trying. By then I had run away & was trying to breathe & come up with a plan to get MY LIFE BACK! This was another example of the Dr making a decision without talking with me but made worse by a staff that was hellbent on preventing me from talking to him & getting an opportunity to share in decisions about my plan of care.
So here I am, knowing I should go to bed but filled with the anxiety of being treated so insignificantly when I already feel so insignificant. I'm not who I was a few years ago when I could've said, "now just what do you think you're doing." to the Office Manager & then promptly put her in her place & made her realize how out of line she was. No, I'm filled with anxiety because I am running out of Dr.s to work with since so many operate this way & running out of time to find the ones I need that will truly help me. Filled with pain that never ceases, wondering how I'm going to keep going on when it seems like so many of the problems I face come from the very people I have to rely on to help me.
Those are my two MUSTS & honestly, I won't live without them. It's rather pathetic really, with my quality of life already so low, that I have to fight for anything to survive. It's so stupid I'd laugh if I could stop crying.
So, since I have to be here for my family the fight for those things continues & I'll keep doing my homework on patient's rights & accessing help where I can. But in the meantime I need to find a funny joke or some diversion so I can go to sleep tonight instead of twist in a relentless stream of dreams that remind me I'm sick, I'm at someone else's mercy, someone who doesn't know what my life is like nor has he apparently listened to much of what I've said in the past two months, and that I'm of such low value the Manager of the Dr.'s office can actually get away with demeaning me & scolding me like a child.
It'll be hard (I write as tears stream down my cheeks) but I'll look for a way because for now I can't stop fighting. The single hardest thing about a chronic illness with pain, besides the pain, is this. I'll do my best to get through tonight but I know eventually, it's this treatment from Dr.s that will send me spiraling into a nervous breakdown. It nearly has already, a few times. I guess I should admit that I hope that I spiral into a nervous breakdown, because as the chunks of my soul are ripped away, so are my reasons for fighting to live with this shoddy quality of life at all and a breakdown is actually the better choice for my family.
