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

Please Return Wednesday

I keep forgetting it’s Thursday. I know that today is the day before the 4th of July. That part I seem to be having no trouble remembering. But remembering that today is a Thursday is not working for me. I’m not talking a mild forgot once incidence either. I’m talking I went to the court house today and thought it was Wednesday until the clerk told me otherwise, then showed me on the large calendar on the wall behind her. They’ve reminded me on Twitter twice. The Victoria’s Secret Angel card guy even reminded me it’s Thursday! I’m having a serious issue with needing one more day in my week today apparently.

Husband says he thinks it’s because I slept through Wednesday…

I didn’t sleep THROUGH Wednesday, I just, slept on and off a lot yesterday… which turns out was Wednesday. I swear this is not my fault. It is totally my Lupus… really…

Oh, what triggered it you say? Well… I guess I did have to do with that part, yeah…

We got back Sunday from our Family (my Momma’s side) vacation and Honeymoon. I didn’t exactly rest afterward like I know I should. Granted I had slept a lot in the car cause I was already sick, so to an extent I felt like I’d been resting already. My body previously started crashing on Friday pretty hardcore. I can’t really claim I had any spoons left by then really. I saved up maybe two spoons on the two day drive home and crashed Sunday night. Monday we find out a best friend, so great a friend she was in our wedding, is having her 21st Bday!! Technically her birthday is the Tuesday, but the dinner and subsequent pub crawl would be Monday night. Woohoo! Not missing this.

That didn’t make Husband happy. He’s looking at me with this, no please don’t you dare do this to me again, look. I just look back like I have no clue how he can fathom a different decision in this situation. I mean come on, I’m already sick, my body is just gonna keep crashing…. whether I go out or not. Why not go out and have fun before the Lupus crash really hits?! This seemed like a fair justification to me at the time. Husband pointed out that I can get sick on top of the illness my body obviously is already fighting.

Oh pooh!  **Great response right?**

It didn’t help that he had other plans for the night, so he had no way to take care of me or make me go home if I got tired or looked sicker. Which didn’t make him any happier. But he drove me up to the dinner and headed to his plans for the night anyway.

Here’s where a beautiful miscommunication happened. I told Husband that I thought I would go on the pub crawl, since he wouldn’t be with me. He heard me say that I wouldn’t go on the pub crawl since he wasn’t with me…. well that led to a lot of confused texts and calls throughout the evening and later missed calls once I was in the clubs.

It doesn’t help that I almost lost my phone in the bathrooms twice. This has been happening to me a lot lately. I almost left my phone at a rest stop on our trip South.

I went on the pub crawl. The level of liquor aside, it wasn’t the healthiest of my choices lately. Being inside the bars, all the people, shaking hands, speaking close to my face, even kisses hello or goodbye on the cheek. I was in the true cesspool of diseases, any of which disease I easily could catch on top of what I have (noncontagious to others) now and I was LOVING it!!! I hadn’t been out and really had fun since the chemo. I mean the last treatment was only two weeks ago. But who cares there isn’t going to be another one!!! AAAhhhhh I wanted to PARTY!!! I really didn’t go that crazy. Drunk granted. But unsafe drunk, black out drunk, any extreme like that. Really not big on that kinda drunk since I was 21 myself actually;) hahaha

**I sound like I’m going a little crazy right? Cabin fever does that to social butterflies I tell you**

I was having a great time. I’d even met some current social chairs to a few Frats (I’m Alum, but I know my girls would love to party with them) I was talking about the potential for socials for my girls and getting pretty excited for them. All of a sudden there’s my Husband standing next to me and pretty much carries me out of the bar!! WTF!?! What just happened, where did you come from, why didn’t you let me finish talking???

Why aren’t you wearing your mask? was his response…

I didn’t have a response for that, other than not wanting to, which isn’t a reason at all. Not when it comes to wearing the mask.

I was awake part of Tuesday, but mostly from anger. I didn’t have a good reason, beyond his over reaction, to be mad at my Husband. I was mad though. It didn’t help that he was by far more angry, so he had a snarky response to no matter what I had to say.

When I say part of Tuesday what I mean is I was awake for coffee and breakfast, I did that part myself:)

Then I slept until dinner, when I went out with my bestie for girl time to catch up. I legit don’t remember sitting down when I got home after dinner, let alone going to bed.

Then I woke up this morning at 7:00am ready to get work done, like I planned to Wednesday! Only to find out it’s Thursday. So can we please rewind and return it to Wednesday that way I can get done what I planned to do today and have Thursday to work as well? K, thanks.

 

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.

Chemo Brain- Anything like zombie’s… no?

Brains! It isn’t as cool as it sounds. Like any Romero movie at the end, there’s a sense of doubt. You don’t really know whether the characters survive when it comes down to it. Well, that’s how I feel about my brain right now. When the treatments over, in the end, will I get my brain back?

I thought I lost the previous part of me after my strokes. I know I got quite a lot of my brain capacity back, but I still struggle with certain aspects. I still deal with long-term memory loss, confusion, mixing up words, vertigo, etc. But the scale that my confusion has reached with chemo brain has essentially immobilized me intellectually. I need so badly to learn, I want so badly to learn. I’m always curious I love finding out new things and asking questions. Chemo brain doesn’t let me make the connections. My fiancée and I were trying to watch a movie last week.  We re-watched the first part of the movie every day for four days.  because every day when we sat back down to watch the rest of the movie I couldn’t remember what we had already watched.  So we had to watch it again. Which is really not cool. And after a while I lost interest in trying to figure out what the movie was about. I didn’t really care to know what happened because I didn’t really understand what had already happened. I didn’t understand the context. I get confused constantly now some will explain something to me and I will totally not understand it the way they meant it. Simple instructions have become a nightmare. Having simple anymore. Granted, initially I did do my own research on this particular symptom. I was sleeping constantly, exhausted, not really following things that I read well. But I complained,  a lot. My parents did the research on my various complaints. They came to me saying “hey! We think this might be what’s going on.” They were right. I did the reading myself and all of the symptoms lined up. I wasn’t going to worry about it until I’ve spoken with one of the specialists that didn’t really seem worth freaking out until I knew it was actually going on. I mentioned it to the oncologist at my last appointment, I only see her once a month by the way. She told me that it couldn’t possibly be that symptom. Why couldn’t it be that symptom? Her argument, you can’t have this symptom this early in the treatment. Well, that doesn’t seem like a very good argument to me. Especially when we know that I always get symptoms and side effects that one in 100,000 people get from any given medication. My parents call me the canary in the coal mine. My sister were asked to even the smallest thing with the most extreme reaction possible. So why then could not possibly be chemo brain? Because my body wasn’t following the normal path of oncological treatment.

This doctor has no ability to think outside the box. If I’m not exhibiting classic signs or symptoms then the doctor doesn’t acknowledge the issue as being part of her area of treatment. Which is a real issue with my specific case. So I asked my neurologist. He said “Woah! Not sure what else it can be?”  and he wasn’t the only one. A number of my specialists at this point have said that the only possible side effect I could be exhibiting with the particular symptoms that I described would be chemo brain.

So how do I treat this? Is even possible to treat this side effect? Or is this just something I have to deal with until the chemo’s over? I had to withdraw from my J semester class. You can even watch a fluff film, why would I be able to do academic reading? I tried, I really really tried.  But between being awake at the weirdest hours, rereading paragraphs over and for again, and trying to figure out how to connect what I read with class content got ridiculous. It was kind of depressing for me to have to drop the class. I really thought this time that ideally make it through. Not to mention, I really liked the topic of the class.

Do I Have A Doctor’s Appointment Today?

This is a question I have found myself asking a few too many times a month! I write down my appointments in my day planner as well as my iPhone calendar. This means, even if I’m being irresponsible and playing on the internet instead of checking my day planner for the day, with the new iCloud connection my phone and computer have alarms that go off to remind me when I have appointments that day as well as a reminder for any appointments the next day.

Somehow I still manage at least one day a month, if not weekly lately, where I have no idea if I forgot an appointment, wrote the time down wrong, had the date or time changed after scheduling it, etc…!?!?!

Which of course means I find myself on those days, awake well before my alarm is set to go off, in a panic, ready to call the doctor’s as soon as their office opens up!!

But it never ends there. Even if I don’t have an appointment that day (pure luck maybe?), I still have a long list of other necessary “errands” to complete. Almost always calling doctors, updating files, filling out forms. All of these things while I am exhausted and feel awful.

I can’t imagine trying to do this by myself. Being a self-advocate isn’t the same thing as trying to stand on my own. Self-advocacy is important to any individual, but trying to get through the added complications in our lives without support would be, well…the last straw in a set of shitty circumstances?

Doing this alone isn’t impossible, but no one should have to go through something like Lupus alone.

If I haven’t mentioned it before I’ll make sure I do now: Take someone else with you to all of your doctors appointments! (That goes for healthy people too when it isn’t a check up, in general) Sometimes it blows my mind how much can happen in one appointment! As exhausting as just feeding myself can be on some days, how am I going to make it through a doctor’s appointment (let alone more than one in a day, which is happening a lot lately!), if I don’t have someone else there to catch what I miss!?! Catch what I just don’t hear because I’m too tired, or focused on a different matter or issue or pain. Having another person there insures that I have another opinion to discuss what the doctor brought up afterward. Having someone else there means if I had something specific I wanted to bring up, but I forgot to write it on the list, that person can remind me!! It also means if a doctor is trying to push a treatment  that I don’t want to take, I have someone else there to back me up. Someone else can do the driving, so that way my blood pressure doesn’t necessarily skyrocket by the time I get to the doctors and even if I have a migraine I’ll make it to the appointments as scheduled!

There are a number of other huge benefits to bringing someone else to your appointments not the least of which is conserving as many spoons as possible! If I really have to list them though, then it isn’t worth convincing you… If you are trying to advocate for yourself alone all of the time, you’ll learn pretty quickly how hard it is. It doesn’t have to be parents, it doesn’t have to be a significant other, it doesn’t have to be siblings or anyone obligated to you.

I have many friends and allies who would step up and help if I asked! If you need to look past your immediate circle for support then do so! Find someone who will help you remember if you have a doctor’s appointment that day.

It surprises me every time, but when I take the courage to reach out and ask for help, there are people who turn out to actually care. They turn out to be willing to go the extra mile to be able to be there not just for me, but with me. :)

Falling Asleep

“Aaahhhh!! Baby!?!” I holler for my BF and for a minute I think, “Maybe I’m alone this time. Maybe no one is here.” But then I hear my dad’s voice. This is almost more confusing in my not-quite-awake state. Then I remember that my dad has the shift while my BF is at work.
Was it that late, really? When did I fall asleep? I ask, my Daddy answers the best he can. I was asleep when he got here. BF had told him I fell asleep playing on the computer.

This keeps happening–falling asleep in the middle of anything, like texting conversations where suddenly I stop. Yep. Either I got randomly busy and I’ll apologize later or I fell asleep! I fall asleep in the middle of eating. The other day BF had to convince me to get food out of my mouth cause he couldn’t get me to chew it as asleep as I was! This has been happening for a number of months now. I sort of assumed that it was my Fibro or CFS, but I am definitely getting more tired, more consistently. More specifically and annoyingly, I’m falling asleep all the time whatever I’m doing. I even start falling asleep on my feet while I’m standing.

It bothers and frustrates my BF to no end because for him my computer being on my legs or stomach that long makes him worry that I could have permanent damage (I mean we’ve all heard about how laptops are slow cooking our legs right?)  I already have growing nerve damage in my legs; cooking them won’t help at all!

**”Oops–as I slowly lift my laptop, so I can put the lap desk under me–Hehe”**

I feel like all I do is add stress to his life!! But this is a big factor for why I don’t get left alone any more. I have caregivers, though unofficial, all the time (family and friends). They all take turns, even down to planning their schedules together, to make sure I have someone here no matter what the situation.

I don’t realize I’m falling asleep. It isn’t like my eyes start closing or I am drifting off slowly, but that I’m wide awake and the next thing I know I’m waking up with no idea that I had fallen asleep!

When I used to fall asleep, I was fully aware of it. I have typically been such a lucid sleeper that after I wake up, I will process a conversation that happened around me while I was sleeping! Now with this passing-out-whenever thing, I don’t even remember my dreams!

This scares me. I’ve never not remembered my dreams or known what was going on around me in my sleep. Now I get nervous about sleeping, because of all things, I don’t like the idea of not knowing…I wish I could find a happy medium between Insomnia and Narcolepsy!?

Finding Out About The Oncologist

11/5/13

I met with my Rhuemy today. I also had to do two other doc appointments before that!  It was an exhausting day filled with information. As well as adding to my questions.

I feel like I was a level of hyper focused wired and scattered by the end of the day that I haven’t reached in a while. I started my morning at 7:30am I get that for some people that’s nothing or even sleeping in late. Well 1. I feel sorry for you and 2. I can’t get up that early. Like CAN’T! I hurt and have trouble moving or thinking. I usually puke, have a migraine, my stomach bloats… It’s pretty ridiculous and I can go into more details if someone asks hahaha otherwise…

Let’s start with the fact that I wasn’t having the majority of these problems when I woke up. Some symptoms, not at all, other symptoms so mild they weren’t what I consider there.  I think that this was the affects of the hormones.

My Dad and I left around 2:00pm so that we could get there on time. Admittedly, we should have left earlier, this time was the latest possible and pushing it. But I was exhausted and failing to wake up from my nap that I’d barely had a chance to fall asleep for. I wqas a zombie on the car ride, but started to pep up as we drove. I picked music off my Daddy’s iPhone and we talked as my brain started to work again. It was fun like when I was younger (Middleschool and Highschool) and my Dad took me to my appointments! I wanted to go to lunch and the art museum after hahaha If only I had had the energy like I would then! But now that I think back, I didn’t have energy then either. That was why my Daddy; chose places where I could sit down, always got me fed first for energy, etc. My parents put an amazing amount of thought in to how they interact/take care of me. I’ve noticed recently how much that rubbed off on my siblings as well;) haha It seems to be rubbing off on some friends here and there. I like this, I hope it is a positive influence. So far it seems to be! Nurturing is something we observe and develop just as often as we are “naturally” born with it.

When I walked into the hospital I go on, like, display mode? I am an oddity the doctors always put me on display since I was little. I was starting to feel like an uber sorority girl on extra lattes! I couldn’t concentrate in the waiting room which of course meant I started commentating my frustration about filling out the annoying pain and feelings resume where I describe with numbers my pain lately. I get to fill these questionnaires out in every doctor’s office, every single visit!

Not surprisingly, my blood pressure was high… again. Not too high though which is nice. I’ve been worse… it was 158/98 if you’re following the numbers:)

Finally, I got to see my Rheumatologist. I started with updating her on how far I’ve gotten with everything I needed to do before. Thus giving her the timeline, within the window she created, that I am agreeing to.

As much as the hormones are helping with the Lupus and RA, they don’t seem to be doing anything for my brain stuff. Everyone I talk to can see how much better my health is since the hormone treatments started! All of the docs can see it too! So my family and friends keep asking if that means I have the option of just sticking with the hormones as a treatment on its own… sadly not an option. The greater damage I am receiving is from the brain being attacked. So I need to take chemo to treat that part of my body being attacked, no matter how awesomely my body is reacting to the hormones elsewhere!

The Doctors name was given to us and an appointment was scheduled for us to attend. It was done. That’s when it got interesting.

Cognitive Creativity

I get tired of not being able to find the right words. I get tired of having a word so clearly in my mind, but so impossibly absent from what I am saying.

I get frustrated, believe me. I get angry that no one else can understand what I’m trying to say. I get angry at myself for not making sense. But then it just sounds like I’m frustrated at whomever I’m talking to.

I’ve tried the “dumb blonde” approach, but when it comes down to it, I’m not an airhead. I can’t act like I am one without eventually getting insulted when someone treats me as if I actually am (let’s not get started on elitism today!).

I’m working on a new way of looking at it: have fun with it! Make up my own words! Or use a few in ways other people wouldn’t think of! I don’t know, just get creative! I’m already Except Izzy, now I can use that in a positive way! ;)

Lupus Cerebritis

I got an interesting phone call yesterday between naps (if that’s what you call sleeping 6 hours and being awake for 4 hours to be!).

My rheumy and neuro have been chatting. They’ve decided that the results from my earlier tests might imply that rather than having MS as a primary condition, I might have Lupus Cerebritis. I never thought I’d be happy for a non-definitive diagnosis! Boy am I! With the fact that for 18 months my MRIs have shown a steady increase of brain damage (with no sign of remission); the first diagnosis was that I have a non-remitting form of MS, which, I’m not gonna lie, was an idea I wasn’t too keen on.

Lupus Cerebritis would explain a LOT of symptoms!! Fatigue, dizziness, confusion, speech, anxiety, depression, migraines, memory loss, etc. On the other hand, all of these symptoms are also explained by the MS. We’ll just have to wait to see.

Well, that’s creates another problem. To see which of the two diseases I have requires a lumbar puncture. Strangely enough, with all the tests I’ve had done, I haven’t had a lumbar. Now, the trick is that I am allergic to local anesthetic and so, they won’t be able to use anything to numb my lumbar area for that big, fat, fun needle! You can bet I’m looking forward to that!

My Dad says that when he was younger and the needles were bigger they weren’t able to anesthetize him for his spinal tap either! HE says, if he could handle it at the time, than I can do this now!

My sister says that I have a way higher pain tolerance than I realize. In the wording of MD2, a friend, “You just don’t have the chance to turn off the ‘pain tolerance switch.’ Izzy, you’re stuck dealing with the pain all of the time. Most of us get a rest from it.” Because I am already dealing with a level of pain way higher than everyone else, sometimes I can withstand more pain than people ordinarily can.

I know on some level they are all correct. But I still am not interested in the discomfort

The docs say that they won’t start the chemo until I have had the lumbar, but then that leaves me a bit confused as to why it matters that we know right now whether it is MS or LC when the treatment they would give me (as far as I’ve found in my research) isn’t any different whichever of the two diagnoses it is. First they give me a very short window to start taking the chemo treatment (I have to start by the end of November or my chances for success drop significantly), and then they give me a huge list of things to do, like get a lumbar puncture, before I can start! How frustrating!

So at least I’m kept busy for the few hours I manage to stay awake in a day! I WILL get this stuff done, so that I can start earlier in my window rather than later, thank you!!

Still waiting for the rheumy to call with the name and the appointment time for seeing the oncologist.

Chronic Illness & College

School work, making it to class, processing what I’m reading all depend on the day. Some days its fun. Other days that part of my brain just doesn’t live in my head. And, of course, I do mean my head, not my mind. It’s physical.

And, of course, it’s not just my head! Will my joints and muscles, which are necessary to complete any progress for the day, actually  function! Will my brain send undulating waves of vertigo with its ensuing nausea?  Cause let’s face it, there is a point where I just don’t have the fight in me that day. There are just days where I can only  show up late to class, fall asleep during class, or get up and leave class. And then there are the days when I can’t understand the reading I did twice or those days when every time the prof speaks sharp pain shoots in my brain. And those days when I can barely sit in the seats from pain with the students low chatter throbbing in my brain and distracting me. And those days when I’m not able to take notes cause my hands are too swollen.

These are all just issues I deal with 

IF I get to class that day!