You Deserve To Have Me Count Against Your Dropout Rate

When I dropped out of High school I was months away from 18. So that still requires a legal gaurdian to sign you out. My father went with me that day. My Mom being a highschool teacher doesn’t have as flexible hours as my father.

When we got there they took us into the principals office. Where all of a sudden a realize I’ve been bombarded by an entire education team. The Superintendent, Prinicipal, both Vice Principals, counselors, teachers, school board reps… it was a circus all lined up in a horseshoe of overbearing male posturing. I waited to see who they had assigned to be ring leader.

Of course, the nice Principal and very nice vice Principal who had both known me since I was little had been given tthe job to do most of the speaking. I wonder how they were convinced it was right to treat me the way that followed? They tried reasoning and twisting and political speak.They all started chiming in as my father and I defended our points valiantly, though depressing that we had to fight to begin with. I was raised by a politician and I understood their bullshit wording and the reasons behind the frantic fae smiles. They didn’t think I’d done my research. Sorry folks, there’s a reason your losing one of the smartest kids in your school. Cause they wouldn’t find a way within NCLB to get my credits to work.

Yet still had the gall to try to convince me to “Withdraw with the intent to homeschool.” Which isn’t the same thing as dropping out of the system. The difference being I don’t count in their state report card as in their drop out rates.

Oh no sirs! We kept trying to explain, not that we got to talk much. Which is saying  a lot coming from a professional talker. Finally they did something that still baffles me and I am not sure is legal or forgivable.

They removed my Father from the room to talk to me alone. I am VERY very lucky I don’t get intimidated. Cause they then tried to convince me it was my parents making me do it. I flipped out on them. I’ve made all the big choices in my life since I was old enough for my parents to explain things and for me to do my own research and understand it.

How dare they minimize me that way, I was not someone to be “handled.” I refused to speak with them farther until they brought my Dad back in the room. But first I chastised them looking them each in the face, verbally reminding them of the promises, the contracts they’d signed agreeing to all of this. They had broken every promise toward my education they made when I first started High school.

Then I went silent and waited.

They started up again and I got mean. I flipped out. I heard later that the entire school’s front office heard me (I don’t have a quiet voice, it projects naturally, and I was furious at that point) knock them all down a peg. Ending with the fact that this was my decision. “Hand me the papers to sign and bring my father in so he can sign his half as well. Because I absolutely will count against your drop out rate. Because I DID the work. I did more than your students who are about to walk, but you won’t let me from a technicality that you aren’t willing to help us find a way around. Bad form. You’re educators. Not the people who derail those who want an education. When dealing with a student who has the system setup against them it’s important to have their back and find the loopholes and back doors in the system to help those students be the success stories they should. I don’t mean cheating, I’m talking about finding a way for them to have an equal chance. But you all, everyone of you, failed with me. So more than anyone I know, you deserve to have my number count against you on that dropout rate!”

They brought my father back in.

A few of them had tears in their eyes, all of them were apologizing.

All of them deserved to feel that way. They deserved to not get to cushion their emotions behind a desk. To recognize that if at any point one of them had tried to help figure out the new system when it came to me, we wouldn’t be there.

But we were and I dropped out. That was 12yrs ago

Will I still be who I am If I stop giving chances?

Will I still be who I am and want to be if I stop giving people chances? There are so many pros and cons to both sides. Not getting hurt, not experiencing something amazing, not being taken advantage of, not learning something, learning something painfully. The list goes on. But the biggest con for me; will I have lost my love for the faults in humanity and every individual’s ability to rise above it?

But would I still be the me who I believe in when I look in the mirror? The person who believes that others can change if anyone bothered to let them… and if cigarettes are any indication or break ups for that matter, it can take quite a few times before quitting- a pattern, a behavior- finally sticks. I certainly know it takes a lot of times messing up, depressingly often, for years, before there is any noticeable changes in myself. Even when they are something that I work on everyday.

I talk too much, I come off too strongly to people. This can be very off putting. With the abuse I’ve been through I have been told how awful these traits are to the point where I realized I haven’t believed I’m worth being friends with for quite a long time. The worst part is, it isn’t like anyone else I know doesn’t just reconfirm they don’t like these essential parts of me being who I am. I just wish one person not my parents would tell me that those parts of me are good.

Do I change these things to fit other people? To not deal with the heartache of being so lonely? If I do that, will my heart ache for who I am stifling, my true me? Maybe they are all just right, maybe I am the problem… I am too much. Is that a bad thing though?

If so… how do I change this part of me that is so strongly ingrained in to who I am? If I don’t change then do I put up with the heartache, attacks, bullying of all the people who claim to care? Before of course disappearing from my daily life, but not before they put in their two cents, with the rare occasion I do see them and the bullying starts again? They have already been walking away claiming to be the victims- as I have been lashing out at them for being dragged into my now old group’s nasty drama then having their self absorbed drama/hormone induced narcissism (I know, mildly hyperbolic, but really mildly sadly) jumping on me and blaming me for it.

I want nothing of those people. I want to start new. I want to start listening to my gut and not letting my mind, circumstance, and other people I trust too talk me out of those truths I know

Every time I don’t listen to my instincts I get royally screwed over. Almost always with that person escaping as the victim cause they are “pretty little liars,” but being as blunt as I am… I must be the bad guy right? I won’t play their gaslighting games anymore. I’ve seen therapists long enough for them to tell me I haven’t an ounce of narcissism in me, that they are projecting, that I am being gaslighted. But I still keep making new friends who do the same to me over again. When will it end? How do I actually walk away from these toxic people when they are as ingrained in to the small town life that I live as they are?

An example of why I can’t walk away from a big part of our old group of friends is that in order for my husband to get promoted at work I have to play nice to- nasty narcissists who are manipulative and abusive in order to get what they want. Who somehow, until recently, would gaslight me into believing it was me. I swore I was cutting these people out of my life. But I can’t not if I want my husband to get a salaried job and not just be on minimum wage. Thank goodness for Obamacare or I’d be screwed with no healthcare until he gets moved up. But if I don’t play small town politics with these crooks like they are friends then any chance for advancement is going to be a nasty fight.

Thank goodness the top bosses aren’t in that drama nonsense. Because if it goes wrong, which I’m hoping it’s my anxiety thinking there’s no chance it won’t, these bosses should be able to recognize that this person who is above my BFG and training him has a personal issue with me and is taking it out on BFG. I have an issue with my husband NOT having an issue with the things this guy has done to me and to BFG and other friends at this point– all for this guy’s own gain. But that is so very separate an issue from that of playing politics of a corporate wife, even on the barely above minimum wage level. Because this being a small town, me deciding not to keep toxic people in my life limits who I see drastically. Other than for networking for BFG’s work. Which being as small a town as it is means seeing almost ALL of them, so trying to cut out the toxic people is practically lip service to myself… at least I haven’t run into my ex-husband in all this. That would be the toping on the cake.

I’m done giving these people chances, but I have to keep playing like they matter to me, I have to keep giving them chances, as the more I see them or interact with any of them– the worse my now continuously self-perpetuating abuse cycle in my head grows, just by hearing the things they have to say to me, seeing their faces, knowing to my BFG what they did just doesn’t matter to him even if it matters to me. Other than that it may cause problems for him with work and said people. But my husband needs the promotions for our family. Am I being selfish to ask that these people not be in my thus our lives?

My psyche and ability to move past my PTSD sooner rather than later or never versus my husband actually having a job that supports us as a family? Do I ever have a choice that’s a good one or will it always be to sacrifice one piece of myself or another? So do I screw up our family’s future possibly by taking away chances from the people who have already burned me or do I keep being me, letting them in… knowing in the end I will walk away far more damaged than I was before? I ask this as if it is really a question, but perhaps it is all rhetorical, perhaps I really have no choice, after all I am only being me

… right?

 

Making the Equation: A + B = D

A+B=D That’s a phrase I tell myself over and over again in my house. It is part of how I am figuring out and growing in relationships and life.

We all come with baggage. What that means when it comes down to it is that it’s hard to learn new patterns in life from those we develop based on our experiences throughout life. (erroneous example: If a guy hits me every time I say the word dog, I’m gonna learn to stop saying the damn word).

That’s really what we mean by baggage.

When you have an experience over and over again; be it the way of a parent relationship imploding, a year in college that threw your life off track, an abusive relationship in college, or a health condition that got torn down by previous significant others… baggage is referring to the patterns that these interactions built into us.

Due to time after time of the same behaviors. A+B always equals C right? That’s what you learn. Every time your Mom comes home she asks how your days was and makes you cookies, it’s a wonderful experience, let’s say? Then if you came home one day and she wasn’t there no note, nothing, would you be worried? It’s like that! You always know what the equation is in each situation you’ve experienced before. When you are in a negative situation while developing these patterns then you’re going to look at the equation and reach the conclusion; a given of something negative.

It seems to me that most of us develop defense mechanisms to deal with these negative equations. Usually the defense mechanisms aren’t positive attributes for communication, for various reasons. Not just communication, but developing relationships, romantic or not. When you leave the negative situations behind it’s hard to learn to adapt to a different equation.

In our situation, my husband and I both had various behaviors that shutdown a conversation when we weren’t willing or ready to deal with the topic. Perhaps I shouldn’t say had, we still have these defense mechanisms, but when we were able to see that these things were happening we were able to start working on it. We use a variety of techniques from key words to phrases, to rules about situations before they happen. We had to teach ourselves with each situation that A+B doesn’t have to = C the equation can have other out comes (it isn’t always negative) A+B can = D. But this isn’t something that just knowing means it’s solved. Humans are never that simple.

When A+B started to equal D more often I believed that the equation could change. Then my Husband flipped out on me. He went very manic and crossed lines I swore I wouldn’t allow to happen to me… He ingrained back on to my brain the equation A+B= C (at least with him it always will now) and I’m working all over again for the belief that this equation isn’t always a true statement. I don’t want to run off any other man I love because I don’t believe it’s possible For the answer to be D.

Medicaid- Alien Status

I’m currently listed as an ALIEN on my insurance causing me to not be able to pick a specific insurance plan… Aliens are only allowed emergency care they explained to me… So I can’t see any of my doctors, specialists, or get my meds, unless I want to pay out of pocket? I’ve always been a US citizen, how did this over site occur you ask? Well, apparently someone in the Co. Job & Family Services had to have checked an incorrect box… yep. That’s the reason I’ve been having insurance issues since March, someone checked a wrong box. It took until JULY for me to find someone who actually knew what was wrong with my insurance. Feel my bitterness radiate.

My Brain’s a Goldfish In a Bowl

The goldfish swims around the bowl in circles. There’s an iHome on the desk the goldfish passes with every sweep. Wooh! iHome! *Goldfish is shocked* Swims around again passing the iHome; Wooh! iHome! *Goldfish is totally shocked by this new item in it’s view.

No matter what, by the time the goldfish gets around the bowl, it’s already forgotten about the iHome. This is my brain on Chemo.

Lost: Sense of Taste–If Found, Please Return

So I lost my sense of taste.

In a really weird way at that. Like my cousin explained it, my taste buds are like volume dials. My salt volume has been turned up to a 10 where as all the other flavor volumes have been turned down to a 3.

At some point between my 2nd and 3rd Infusions I started to lose my taste. I didn’t notice what was going on until after it had fully hit me symptom-wise. I blamed it on the fast-food restaurant not mixing their pop right. When I made dinner, it was that I didn’t put in enough salt. Chili, the chips were just stale.

But I knew for certain, and had no way to deny it, one morning brushing my teeth: With each swoosh of water as I rinsed my mouth, it felt like I was gargling the ocean. … I couldn’t make myself swallow. (Yeah, yeah, that’s what she said.) It was awful. I could convince myself for about three swallows that it was just a nasty pill, but when you want ice cold water to wash down the salty pill and instead you get salty water washing it down, it becomes an unhappy circle.

In the process of trying to figure out what I could eat and drink, I got so dehydrated that I had to get IV fluids at the hospital.

From what I’ve read, I don’t get my taste back until I am finished with chemo. Great.

Choices: Between a Rock and a Hard Place

I think it finally hit me how much all of this medical choice is derailing my life. I always move through everything one checklist after another. But I just recently got a chance to line up those check lists and realized almost all the boxes still haven’t been crossed off. I make all of these lists, but only manage to get a few things on each list completed. Don’t get me wrong, I am proud of myself for each of these chores or achievements. Unfortunately, it also means there are a ton of things that I don’t ever get to complete. If I do manage to complete an entire list. It certainly won’t be in what a normie would consider a “reasonable” length of time.

Postponing Chemo Treatment #2

Yesterday was infuriating. I was so shocked, frustrated, confused, stunned? I don’t know which emotion of those I was feeling, I was practically numb with too many. All of the above emotions, I suppose?

We were driving to the infusion appointment that is more than an hour away from where I live, when I got a phone call from the Oncologist’s Office saying:

(conversation is abridged for pertinent info, leaving out most of the nastiness, random  extra questions, run arounds, and being put on hold)

Nurse: You’re numbers weren’t good and you can’t do the chemo infusion.

Ummm… excuse me?

**As my Dad pulls onto the exit ramp and makes a turn**

Me: My numbers are what? What numbers? What do you mean I can’t do it today? We are almost to the  clinic!

The nurse explained that when they drew my blood at the last appointment my numbers were dangerously low. That I should have known this. Since the doctor called me and left a message!

Oh…

**I look down at my phone to see if I have a missed call, but the  ”missed call” indicator showed none missed.**

Me: I’m sorry I didn’t get a chance to listen to that message can you please explain to me what’s going on?

Nurse: When we drew your blood. two of the three were low. Your platelet count even more dangerously so…

Me: (interrupting, oops) Platelet count, that’s what keeps me from bleeding out from a cut right? But then do I have a high clotting factor still?!

Nurse: You can’t get the infusion.

**I look up to see us pulling into the parking lot**

Me: I’m already there. I don’t understand what the problem is? I’m clotting just fine. The few bruises I got haven’t grown at all, less than usual actually…?

Nurse: That doesn’t matter. What matters is what your blood work shows. You can’t get the infusion today. You can’t get the treatment again, until we draw you’re blood, that means the infusion will be the 23rd.

Ok, hold on. First, I’d like to say that it is never appropriate to make a decision about health treatments based solely on blood-work numbers! Second, seriously, the 23rd? The day after that is Christmas eve! It’s the day we celebrate my Dad’s Birthday!? (He’s born on Xmas.) I don’t want to spend Christmas eve feeling like shit. Then, if it’s like last time in anyway, I’ll feel even worse on Christmas! What kind of asshole move is this?! I guess it doesn’t help that I don’t trust this doctor that I’ve seen only twice and seems to treat me like I am just another cancer patient rather than recognizing my scenario and bodily responses are different because I’m lupus patient and one shouldn’t consider any patient’s case to be just another anything! So why is that how I have felt both times I met this doc? Thank you very much.

Mind you, as I’m listening to the nurse’s explanations, I’m totally exhausted, have barely woken up yet, really. I’m pretty sure the adrenaline rush from what the nurse was telling me was all that I had jolting me in rather intense spurts to full livelihood. Need I say this is not a very nice way to be woken up? I think the term would be waking up on the wrong side of the bed. It didn’t matter that I kept trying to roll back to my side by being pleasant and enquiring (though more and more forcefully),this nurse was determined to take my happy resolve away. She and the oncologist were pushing me hard, apparently intent with the goal of getting me to fall off the wrong side of the bed.

And boy was it morning! Well for me it was morning. For others, in general, it was just before school starting or just after work starts. For me this was an unseen hour of the day! Don’t get me wrong I love it; am thoroughly fascinated by interactions and life that happens this time of day! I just don’t get the chance to experience it. Because I can rarely function well enough to move, let alone be in a good-morning-mood, that time of day. I mean If I wake-up in the morning before my stomach does, I puke.

I’m sad to say I let myself get frustrated. I was snapping my questions, pleading a little too. Why couldn’t we do this? Aren’t the results of my blood work going to go down with the treatment anyway? Isn’t that the point?

Nurse: Yes the numbers will go down with the infusions, but we have to wait for now because they are too low

Uhhhh Too low… I’m so confused, isn’t the point that they wanted these numbers to hit rock bottom? Isn’t the point to “reboot [my] immune-system by knocking it out completely?” Am I the only one confused here?

Me: Are my numbers borderline or am I am really that low? Cause I’m not having any symptoms to indicate this issue and my body usually reacts to bruising and cuts pretty negatively

Nurse: Well they may have been borderline so I’ll go check.

I thanked her and waited a few minutes. Thinking as fast I could what all of these things meant. Were they taking into account my typically abnormal tests results versus physical presentation of symptoms? Were they looking at my numbers with the lupus-effected factors included? Thinking, thinking, I had to understand, so I knew what questions to ask depending on the answers she comes back with.

Nurse: You can go to the center and have your blood drawn again. She says we can wait and see what the results are today

I thanked her and hung up the phone. I explained to my dad and BF what the situation was and we all went in. The nurses in this clinic are wonderful and greet me nicely. They just got off the phone with the oncologist, so they already know what’s up. They explain that they are giving me fluids while we wait for blood test results. After they have me all set up, checked in, with my IV placed, then they finally draw my blood.

What turns out to be an hour later, they come back with the results it’s gone down more not a lot but my numbers have gone down. They call the doc to see what she decides. It takes four tries and a text before the oncologist calls back. The nurses come back in to my hexagon shaped space that I’ve been assigned and express that the oncologist has said, “Absolutely, no.”

Well, there we go. I call the oncologist. I get her nurse again, great.

Me: Explain to me what’s going on please? Why can’t I do the treatment today?

Nurse: You have a low count and it’s dropped lower. That means it has a potential to drop even lower. Whch means we don’t know what your bottoming out point is. So we have to wait.

Me: What happens if it stays the same versus if it goes up?

Nurse: If it goes up, then great; if it doesn’t, then we know you’ve bottomed and we do the next treatment.

Me: After the next treatment will my numbers go down and bottom out?

Nurse: Yes, your next treatment will drop your numbers lower.

Me: So if my numbers are the same as they are today, at the end of this week,  then you will do the treatment anyway? No matter what my numbers are expected to bottom out either by the end of this week or after the next treatment? Then why can’t you do the infusion today?

**I get admiring fearful looks from the nurses and technicians around me** It appears it’s new to everyone to see a doctor actually question about their medical choices they’ve made about someone else’s body. Not to mention my competence with my medical issues based on my age baffles every medical practitioner I encounter. I think watching a child stand up to a doctor’s decision was baffling in a way that made them more consciously recognize that I’m not blindingly letting someone else control my body. All I wanted was answers. I have the right to understand the medical choices being made about my body. Doctors don’t always know best. Repeat after me: “Thank you for your medical advice. I will take it into consideration while making my decision.” That is what a doctor is for. This doctor didn’t seem to understand this.

Nurse:You aren’t listening to me. None of that matters. You aren’t getting the infusion today. I refuse to talk about this anymore.

Excuse me? You refuse?

Me: Thank you. **As I hang up the phone**

Well in my defense of hanging up on her, she did say she refused to talk about this anymore more. I really had nothing nice left to say to her on that topic or any other for that matter.

I looked up at the crowd in the room, many half gapping at me. I admitted embarrassedly that I hung up on the nurse. That what she was saying was inappropriate, not to mention that I have the right to ask as many questions and get clarification where I need. I ask the clinic if it is possible to choose treatment against medical advise, out of curiosity. Turns out you can’t, because the doctor has to send a prescription in for every treatment. Ah, in the end I never really have the power, do I? They finished the paper work, took out the IV, and prepped me to leave.

So, everything about the next 6mths just got moved back more. Instead of being able to even have a Christmas or visit siblings and in-laws I’ll be sick at home. Classes will probably have to move back another semester, if not two, at the rate they are giving me each infusion. As I wipe a few tears away I head to the elevators in the process dialing the number for my rheumatologist. Maybe she’ll explain things. I ended up having to leave a message. I’m exhausted, furious, and defeated.

I guess all I can do is wait until my orders get handed down from high. I told me parents and the nurses in the clinic, if I can’t do it this week I’m tired of being pushed around and put off and flibbertgibitted with and that I won’t do it anymore. I can wait and do this treatment in a more extreme situation. The social worker tried to tell me not to make my decision while being this upset. I look at her like she is crazy. Being upset doesn’t change the situation. When I am calm the situation will be the same. I haven’t arrived at the conclusion based off of anger, why would I change my mind?

Me: I don’t change my mind lightly when I’ve made a decision.

We leave. I slept the rest of the day–missing my rheumy calling me back–too exhausted to fight this anymore that day.

 

Neurologist Consult Before Chemo

11/17/13

I had the weirdest neuro appointment ever! It was almost like I have never seen this doc before or maybe the body snatchers are real. My dad and I left the appointment with our mouths hanging open. This doc literally said the opposite that he has been saying for months now AND that is also the opposite of what all my other specialists are saying!! Needless to say I called my Rheumatologist panicking on the ride home from my appointment. She called back a few hours later, listened to my panicked cyclical questioning, then made some phone calls. She was able to call me back the same evening with answers to calm all of the fears the neuro had cropped up! So, after all of this, I have found out definitively, that I have to get the Lumbar Puncture. Not gonna lie, I was holding out hope still that I wouldn’t have to bother with that particular test on top of all the others next week!!

Are You In Pain Today?

Are You In Pain Today?

Every questionnaire at every doctors’ appointment I go to asks me this question. I used to ask my parents when I was little, ” What does that question mean?” I thought I must be misunderstanding something… was I in pain today, well duh…

Am I supposed to be rating this “Am I in pain” with my own rating scale? Where it isn’t pain until it’s worth pointing out to my parents or complaining about? But then how can the doctors know what this scale is? Even when I was little I understood that they can’t know this. So they have to be asking on a general scale… once again I’m at an in pass… I don’t understand what this general scale is… what does it mean to not be in pain?