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Thursday, December 10, 2009

Gluttons for punishment

You want more updates and details huh? Ok, but you were warned.

I woke up today with my left knee and shoulder throbbing, with background headache. The knee has been bothering me since the weekend, but the shoulder is new. Well, new to this level. I had injured it oh so many years ago.

It was passover at my mom's house, and she had run out of clean kitchen towels. I ran downstairs to grab some more out of the dryer and rounded the corner to go back up the stairs, towels in hand, and the little rug she had put at the bottom of the stairs when Whhhhoopppp! and so did I. The little rug was on top of a tile of concrete floor. My years of practice falling down came in handy, in that I did not smack my head. What I did was take it all on my left arm/shoulder. Nothing broke, but I did get repeatedly asked by the doctors if I had really fallen or if my boyfriend at the time had done this to me. I was a bit confused as a teen to figure out how they thought he would have pulled that tiny rug out from under me. Don't you love teen naivete?

The newest in the medications they are throwing at me is Ritalin. It is an attempt to manage the Idiopathic Hyposomnia. So far, other than just feeling a tiny bit off, I don't really notice a change in my exhaustion level. I am not really noticing side effects either, which is a marked improvement from their last attempt of Provigil, in which I was a migraine filled joint achy mess. Where are all the great benefits of wild energy and weight loss I hear promised? See THIS is why I would make a horrible prescription drug abuser! I never get any the fun parts out of ANY of them.

In other news I am fighting with the school to do a 504 for Little Bear. We got the script from the doctor in Sept. We met to determine eligibility in the beginning of October. I was told the evaluations would follow shortly. October finished out and I followed up. Soon they sai50 d. November before Thanksgiving I follow up again and they say the week they return. Still nothing. Yesterday I get a packet, date the seventh saying they need written permission (what about all the papers I signed at the meeting? I don't know if it was on there, I never got a copy!). I keep reading the paperwork, and discover they will have 50 school days from the time they get written permission to do the evaluation. We have aproximately 180 school days. Of which aprox. 60 have already passed, leaving just about 120. So you want me to wait another third of the school year? Uh no.

In all my advocate mommy glory I get on the phone. I call the District Special Ed department. I speak to not one, but two very nice woman who say that they are HAPPY to provide me with info, but until a plan is FILED they can't enforce it. But here are some possible next steps. Maybe. My next call was to the school principle. Who is the one giving me the run around. I explain that it is unacceptable to have this wait that long. She tells me that the OT went to schedule the eval, and that she could not find the written permission so she sent that home. That they would NOT be doing an eval for PT unless the OT recommended it. Never mind the fact that the doctor wants it. Never mind that I was told in the meeting that there would be separate evals for both.

She then assured me that I was not going to have to wait the 50 school days. I do not believe her. So much so in fact, that on the little form they gave me I made sure to indicate where they asked for the date when signed, that permission had been giving at the initial meeting and that the 50 days needed to be counted from then. Then, I handed it to her, in her office last night. She grinned at me through gritted teeth as she accepted it, promising to give it to the OT in the morning.

In which I am angry and curse. Cause that never happens.

I have been trying to write this post. About how fucked up I feel. And frustrated. And helpless. How turtles on their back are starting to look like a good life goal.

I am totally aware it is not that bad. How lucky I am in SO many ways.

But right now? I hurt. And I am sick of hurting. I am not supposed to be driving. Esp. not at night, and rarely during the day. Right now, due to new medication, not really at all yet, till I adjust. And hey, my knees are sucking so bad I can't walk to the store either.

The most frustrating part is hearing a few words over and over again. "Idiopathic" being the MOST frustrating of them all by far. "Inflammation" is just the new black. And "wait" is somewhat equal to sandpaper.

I have been mostly avoiding posting because even I am sick of listening to me. But those of you who have seen/talked to me recently *know* something has not been right. And I guess it is not really fair to keep blowing you all off.

They are testing, AGAIN, for something auto-immune. The most recent Rheumotologist* said to me "there is no reason a healthy 31 year old should be having this many problems". And he was smart and kind and is trying to help me, but I just wanted to scream... WHY DO YOU THINK I AM HERE?!!!

How do I explain to these doctors that they have to figure it out? That I HAVE been waiting. That it has been TWO YEARS of waiting since the first random lump appeared? 10 years or longer since the "idiopathic" stomach pain started coming and going? That I can't homeschool my kids anymore because I feel like shit? That I just want to have ONE WEEK without having to take a fucking pill or another, that most of the time causes more side effects than helps, and really they are just guessing anyway? That I am still scared, EVERY MORNING to wake up and be blind. That maybe this time the pain in my head is a fucking stroke.

That I want my mommy and she can't drive right now either, so they need to hurry up and fix one of us.

And I have spent the last two days LEAKING from my face. Tears and snot. And not feeling sad. Just MAD. Maybe this is the new meds I am on. Maybe this is hormones. Any which way, clearly keeping this shit to myself and a small handful of other people is not working.

I think I am REALLY starting to understand the spoons thing.

*Why is it that my spell check has Herpatologist but not Rheumatologist?

Saturday, January 3, 2009

Math about Face!

When the proposed NJ homeschooling legislation came up a little while ago, I disagreed with a number of points with it. One of the things it was trying to require was that parents submit a curriculum to the Superintendent for approval. Now in theory I get that this sounds nice, and fine and all. In all likelihood before I homeschooled I would have thought that it was reasonable enough. On a personal level I am not concerned about my curriculum getting approved despite my general opinion that it is none of the governments business TYVM.

However the reality of teaching my kids at home is a bit different than a classroom setting, and allows me the luxury/benefit/right/whatever to recognize when the curriculum I am using is not working best for us, and not having to wait an entire year if not more to try something else. So when I look at the fact that Little Bear, who LOVES math is stagnating? I am not just locked in until next September. I order a new course a go for it.

I just took the leap and ordered Math-U-See I will try and post a review after we have been using it for a bit.
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