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Sweet sweet partial relief

I took my third shots of Enbrel and methotrexate this weekend after the two week hiatus. Before I really didn’t think these meds were doing anything for me, I still felt in pain and achey BUT… it’s funny how your brain adjusts to where you are and how quickly you forget how bad the BAD days actually are. After being in horrendous pain and swelling from not being on the meds and then starting them back I see how much of a difference they really were making. I can type without instant pain – I might get sore after awhile but I can type without it being ouchy, something I didn’t have last week or the week before. Chopping hard veggies still is a strain but not impossible, I can hold cups with confidence that they won’t fall out of my hand, I can hold my phone to my ear and talk without my hand cramping. Those “little” things make it s o much easier to pay attention to life when you are not dealing with endless, soul sucking pain and reduced agility. 



 



I am writing this so I remember. Next time I gripe about hair falling out or sun burning me too quickly or a little sore joint – I need to remember that it can be/has been a lot worse and could be even worse than that. I am lucky right now to be able to see a doctor who is working with me, lucky to have insurance which covers the obscenely expensive medications that I would not even try had I not had the insurance. Incredibly lucky to be salaried and have a kind employer during this period of frequent absences – either to see doctors, or for medical emergencies, or being sick because the meds made me vulnerable to more illness, death of my father. All of that in a short time would cause me to lose my job at some places I have worked – plus being paid for time off that you didn’t choose or want to take off is an incredible thing, eases my mind and makes it so I CAN go to the doctor instead of worrying that we won’t have money for groceries because I’ll be missing the hours from my paycheck.



 



Then I think of all of the people who have this disease or other high-maintenance diseases – those without a support system, no insurance, or maybe insurance with ridiculous deductible, insurance that denies access to meds because they want you to try something cheaper for a few months (while you suffer) before they let you have a shot at a very promising treatment that will keep you physically well enough to work. Those who want to work but no longer can because they didn’t get treatment when they needed it (to prevent disability, deformity and loss of function one must be treated early and aggressively). I somehow managed to be in the right place at the right time, my coverage could be lost at any time if the laws are changed. My pre-existing conditions make any insurance under the prior way impossible to obtain. I have already seen how quickly I can go to loss of dexterity and ability, how painful I get, the only reason I limped through those days was the aid of painkillers – if I had to stay that way for months then permanent damage occurs – that scares me! All of those who have no choice but to face down this disease or others like it with no aid are brave for pushing forward.


 
 
   
 

Face, Meet Palm
6.5 hours later, still embarrassed.

So, WAY back when this journal name was accurate (way to go, Emily, titling a journal 'first year teacher' when that would only describe me for...10 months...), I had me a special education program for kiddos with behavioral and emotional needs, at the local elementary school.  I had kids in grades 3 - 6.  Had some interactions with lots of 'general ed' students, but was most attached to the twenty-six or so sixth graders we had at BSE, mostly because we set up buddy systems so my sixth grader had some peer interactions.  

Flash forward 6 years, and those kids are SENIORS IN HIGH SCHOOL.  That's...well, that makes me feel so ancient I might puke.  I know all 26 aren't still local, but I'm up at the high school this year (I can't go into it right now), and I've seen MANY of them, which is delightful and only slightly awky because while they've gotten interested in 'being cool', I am still the dork they used to love.  And still kinda love.  It's nice that I can still approach them, or that some have come over to me.  In the last week (PS, it's TUESDAY), I've had a favor from BG, had a snarky exchange with an EXTREMELY LATE AC (who didn't fall over once the entire time we were talking! Progress!), supported a cooking class that MH is taking, gotten strange looks from my little sunshine AR, heard AD tell me about his love of writing and his college admission essay about his dad (aww), check-in with HG about HER college admiss essay, had a long talk with the slightly-feverish twins B-PS and R-PS, watched LF flirt with the library assistant... almost a third of them, and I know SR and C_ and AT and JD and some others are kicking around.  Not too shabby considering I don't get out much :)

ANYWAY, today I was leaving school, and there was a gathering of some gents, and I stopped because the young MT (9th grade??) and NB (who I met after subbing once, but is kinda a legend in a way) and some others...goodish group.  MT asked for a high-five, and I said 'no high-fives for you', which caused NB to want a high-five (sorry for all the initials, they're minors, so I feel weird sharing real names).  Then the boy in the green sweatshirt said, 'I want a high-five!'.

And I said, 'Sure.  Who are you?'.

And THAT'S when I realized....oh.  That's JT.  One of those sixth graders who are now seniors (and MT's big brother).  Except NOT just one of those seniors, because he's one I've interacted with WAY more.  Seriously.  Over the last few years, I've hired MH to work, seen R-PS, hell, B-PS ate lunch with me one day when I subbed last year and left me giddy...but I've had a TON of time with JT, too.  My blindness and him apparently maturing a bunch since last June... SO embarrassed.  And he was so offended!  Rightfully so.  I actually love that kid, have told people, 'JT? He's awesome!'.  Yet, in the hallway, might as well have been a stranger.  I really feel so bad.

Awful part?  This weekend, I had a friend come visit (yay!), and we wound up at a store where NB was working.  And I told my friend that I didn't REALLY know NB (who everyone calls by his full name), but knew him a little through subbing...and because he was friends with...say it with me now...JT.  I recognized NB in the real world immediately, but not JT.

Head is truly hanging in shame.
 
 
 

   
regular life again
monday i return to work & life. i keep telling myself that using my arm for work will somehow loosen it up, or strengthen it...i'm trying to remain optimistic even as harsh reality settles into my bones..literally.

i'm a girl who can no longer touch her right hand to her right shoulder. a girl who cannot look down at the palm of her right hand anymore. this person can no longer hold a spoon naturally. its extremely frustrating..& absolutely terrifying. 

what if it never gets any better than this?
 
 
   
 

(Head to Desk) Stupid, Stupid, Stupid, Stupid, Stupid
As you may know if you have been reading this here blog, I am presently jobless.  Which is as delightful as nails on a chalkboard.

I applied yesterday for a job (well, technically, 2 jobs) at a charter school in BK for the 2011 - 2012 school year.  I got a response back saying 'hi Emily, please give us times that we can call you for a phone interview because we were really impressed by your application'.

SOARING ON CLOUD NINE, I wrote back 'dear Laura,  I'm really looking forward to hearing more about your open positions.  here are my available times.  I look forward to hearing from you.  Thanks, Emily' (okay, that's not ver batim, but it's close).

Yeah.... the woman who emailed me's name is Lauren.  Not Laura.

Well, I hope she either doesn't catch that, has a good sense of humor, or realizes she isn't hiring me for my reading abilities.  Because GADDAMIT that just happened.  Am I subconsciously sabotaging myself?

Gaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaah


(and I had just been so happy because Kathleen (one of the women who worked in my classroom for a few months last year) had randomly texted me this evening and it was sooo cool because I'd just been thinking about her.  this womps that).
 
 
 

   
Crap
I woke up this morning at regular time, and started to get my clothes out for after my shower.

Then, it hits me.

That huge, epically long meeting Gwen (my principal), Judy (the guidance counselor), Cindy (the nurse), Cathy (the gruff but amazing resource room teacher) and Susan (the woman who runs the other program similar to mine) were all sitting in last night in the conference room until 4:45 or so? 

OH YEAH.  It was the CRISIS TEAM MEETING I've known about for about a month and said I'd be at/should have been at.

Well, fuck.
 
I saw Susan at 3 and she said she had an after school meeting, but didn't tell me it WASN'T with a parent.  I sat around with my staff until 3:45, which was good in its own right because one of my kids is NOT doing well, but... I was REALLY supposed to be in there.

I feel like such a letdown.
 
 
   
 

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Latest Comment
Re: Confirmation - oh boy, i know that game really well lol. i hope you get to a better head space soon!

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