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

My Body is a Mess; That’s The Temple We Live With

I was talking to a friend who was recently diagnosed with Lupus about recognizing symptoms as they show up, telling them apart from other similar symptoms, and understanding if any of the symptoms are related.

One of the things she said to me, when we were talking about her symptoms, that reminded me of my first onslaught of a multiple symptom life was “… I can’t tell how cause my body is a mess.”

My brain hollered Hallelujah, you’ve crossed over to being a Lupie. Our bodies are our temples right? Well here is your temple and no matter how much we clean and dust OUR temple is a MESS!!

But this is the temple we live with; with Lupus. We may not be able to clean , but we can certainly organize our temples!

That’s where understanding how each symptom works in the network of your body’s systems becomes so important.

Don’t Let Them Convince You

I have to say this; for a friend, a fellow spoon, who is dealing with her Rheumtologist telling her she doesn’t have Lupus due to not having an ANA positive blood test results. Which is Lupus 101 people! Many people only test + sometimes, Some people test + all the time (like myself), and others  never test ANA positive at any point in the course of their disease. She has also dealt consistently with unsupportive or negligently supportive family members, due to their lack of understanding or lack of belief in her having the disease.

I know there are many others out there dealing with doctors and family members being unbelieving. I was lucky I always have my parents on my side even if it takes a while for me to find a way to explain an issue so that my parents understand it. It’s not like they can back something up they don’t know!

So to my fellow Spoonies and dear friend, ;)

Don’t let them convince you that you are wrong about what you are feeling happening to your body. If you know something is wrong or right and the doctor says otherwise, for now, work on home remedies to help with the symptoms, but do research of your own and search for new doctors. Get diagnoses slowly. Push and don’t stop pushing. Don’t let people around you discourage you! Go for the littler diagnoses first, then get the specialists to realize the connection and make the large combined diagnosis. For example Thrombocytopinia, Arthritis, Fibromyalgia, Raynaud’s Syndrome. All it takes is one specialist finally making the connection between symptoms to finally move forward with a proper diagnosis.

No matter what, I am the only person who can feel what is going on inside my body. Part of the problem I dealt with growing up was being told what is going on with my body by doctors and what needed to be done to fix it all of the time. Really, I was lucky if a doctor bothered to explain what was wrong in any abridged fashion. Some doctors still treat me like this as an adult. They forget that they are only my medical advisors, they don’t make my medical choices for me. Doctors have the training; but they can’t actually know what is happening to my body past the signs that they see in the blood work and looking at my body and the symptoms that I explain in what words I choose to describe them in.

Not having positive ANA in your blood-work, as well as not having the average numbers on any other blood-work the doctor decides is necessary, will mean the doctor makes an assumption that isn’t necessarily correct. Let me ask you, how do we explain people with auto-immune diseases who never test positive? We can’t explain that by doctors’ “rules.” We can only explain it if it is understood that not enough is medically known about our disease yet, so  a lot of what patients are forced to rely on, as a 24/7 hotline doctor, themselves alone.

I was raised with this disease. I was taught to notice, feel, and decipher all of the sensations that are occurring in my system. Where it became difficult (for all of us) was trying to find words that just don’t seem to exist in the English language to describe what I am feeling to someone who has never felt the same sensations. It was always exciting when I was able to latch on to some weird mangled phrase or analogy that finally clicked in other people’s heads. When that happened, my parents would help me figure out a way to speak doctor-ese so that the doctor, who is listening for key words and will often dismiss anything else (depending on the doc), will understand the symptom I am explaining and be able to properly treat me. It’s a process (I’ll tell you what!!)!

Certainly the concept of scales/ratio that we autoimmune patients are always being asked to describe (“On a scale of 1 to 10, how much does it hurt?) is so skewed that any common understanding we might have had stops right there–and frequently goes backward to the point where what I am actually experiencing can become minimized. The other person walks away with an incorrect view of my situation which is also demeaning to myself and my disease. When this happens, a person like that, rarely has the ability to grasp the difference even if I try to teach it to them.

So, fellow spoonies and dear friend, Don’t let them convince you that you are wrong about what you are feeling happening to your body.