if disabled does not equal unsuccessful, (and it shouldn't) why do I feel that way?

yesterday I heard from the department of education.  they made a preliminary decision that I meet the requirements of a "disabled person," so they are planning to discharge my student loan.

I can't tell you what a relief this is.  as of yesterday, with interest, my loan was up to $44,000 and change.

my parents' and Stacy's parents' houses combined cost about that back in the day.

I know what some of you may be thinking.  I went to school, I got the benefit of learning all that stuff, why should the government eat that loan?

well, I have two things to say to that.

first, if I were to have gone to school a few years later, the government would have forgiven that loan with this new Obama Student Loan Forgiveness Act anyway;

and second, I went to school with the INTENTION of USING my education to teach people with special needs.  and not FOUR MONTHS into my FIRST TEACHING JOB, I contracted a PERMANENT DISABLING CONDITION which I have now dealt with for the last ELEVEN years.  this is no joke, no scam, and definitely NOT FUN.

I have tried MANY TIMES to get back on the work merry-go-round only to have my condition to worsen and then I've had to leave jobs.  that was never a good scene.  trying to get back on disability was a nightmare.  and always, always, ALWAYS I was made to feel like a LOSER.  

I STILL AM, FOLKS!!

it is not acceptable to not be working in our society for ANY reason.  (is it???).

oh, I suppose if I were in a war and had a body part shot off, or a cop injured in the line of duty, perhaps people would respect my inability to work.

then again, people have their stereotypes about those people, too, don't they?

look, I HATE not working.  I HATE not driving.  I feel like I am not in control of my life.  I feel like I still have a lot to contribute to the world.  and I actually do.  more than some of you realize.  but whatever.

what I ALSO hate is not knowing when the world is going to start spinning or the floor is going to start rushing up at me. or falling for no reason.  or the migraines.   not the biggest deal in the world, I know.  I'm learning to cope like others like me.

the absolute WORST part of it all, though, is dealing with people who make me feel inadequate BECAUSE of my illness.

it's not my fault that I don't LOOK sick most of the time!  it's not my fault that I have a relatively rare disorder.  it's not my fault that YOU know NOTHING about it.  educate yourself if you are so interested.  I didn't go to all this physical therapy for NO REASON!  I don't go to doctors constantly or take medications for FUN!  

of course, I am not writing this to offend EVERYBODY.  but, if you ARE offended, I guess you are one of THOSE people.  if not, you've been one of my support people, or, unfortunately, someone like me, and I'm sorry for that, but you are probably nodding your head along with me.  I know from being in support circles that other people's family and friends are the same or WORSE.

anyway, I continue to try to help my family any way I can.  it's not adding up to much, but it's been SOMETHING.  little online jobs, selling things, mystery shopping, book reviews, finding deals and discounts.  and I'm here as support.  it's the best I can do.

excuse me while I complain

I haven't written in a while (obviously).

I haven't had much to say.  I've been home, doing not much of anything and I hate it.  the dizziness still comes and goes.  for no good reason.  I've quit trying to understand it.

I haven't been doing much about it, either, though.  that's probably a bad thing.  but I'm just frustrated and, aside from Stacy, absolutely NOBODY could give a wild you-know-what (controlling myself) about how I'm doing or how my life is going or just anything at all. so I don't care anymore.

yeah, it's one of THOSE days.  why?  I'll tell you why.  because people say stupid things to me and expect me to suddenly NOT be dizzy and back to the way things used to be or

they just don't talk to me at all

nice

it's not that I'm complaining about being dizzy.

it's that they say stuff like, "why aren't you driving?" or "any job yet?"

I'm pretty much talking about my mother, I guess.

because nobody else calls at all.

I went to a rheumatologist to see if I can get better treatment for my fibromyalgia.  she said she "wanted to get to know me better."  that is doctor code for, "let me make sure you are not a drug addict before I give you different medications."  which, in my case is ridiculous, because if she just took a look at what I was taking right now, she could see I was not taking ONE addictive medication.  hell, she could give me a drug test, or get my records from other doctors.  instead, she is wasting my time.  so, I continue to be in pain, have sleeping problems, thinking problems and, well, I'll wait.  she did tell me to add fish oil to what I take everyday, so I did.  no change.

 anyway, that's about it on the health front.

on driving

I've got an experiment for you all.

when you meet new people, tell them  you don't drive.

see how they react.

or, better yet, try to apply for a job.

maybe this is just a Long Island thing?  it must be.

I imagine this would not be as much of an issue in, say, New York City, or some place similar.

so, let me back up a little.

I'm still not driving.  should I be?  my girlfriend is adamant that I should not.

she is afraid that I will have an accident.

even though I have managed in the past.

to say I'm frustrated is an understatement.

her anxiety over it gives ME anxiety then.

so...I continue to sit at home every day and do pretty much nothing.

almost every job I look into requires driving.  some make no sense (human resources??)

I have been trying like mad to find work-at-home jobs.  there isn't much.

the driving thing, though...

I feel the longer I don't drive, the harder it will be.

I mean, I once went six years and then was able to drive again.  but I don't want to do that again.

I am way too young to just be a passenger.

this and that

I haven't written in a while.  Things have been pretty much hectic yet boring at the same time.

The hectic part came with getting my daughter ready for Prom and Graduation.  It came and went.

The boring part is, well, every other day.  But I'm working on it.

Now that the warm weather is here, I've had a little more energy, so I've been inspired to do a little more to better my situation.

For one, I've decided to become a support parent with Parent to Parent of New York State, an organization that exists basically to put parents of special needs individuals in touch with one another for support and so we can help each other find services, learn to advocate for our kids, things of that nature.  I have wanted to do something like this for a long time.  I just didn't know how.

For another, I re-did my resume and I now have an interview next week.  Shhh!  I haven't told many people yet!  It's actually not in my normal field, but I've done this type of work before.  It's been too long and I need to be productive and with people and out of the house.

I take little jabs at creativity, too.  Eh.  Not so good so far.

What I really need to do is exercise.  I feel myself getting out of shape.  Badly!  I told Stacy I want a treadmill since I know I won't go on walks.  I've gone on exactly 2 this summer.  I think I just need to find a good deal on a treadmill on craigslist, set it up, and be done with it.

What I also need to do is write more. And read more. Or my brain will rot.  I have been playing games to try to stimulate it, but that's not the same thing.  I am amazed at how short my attention span has gotten being home alone all day.  

I'm still on the fence about driving.  I think I have psyched myself up a little that I can't now, between the physical therapists saying I shouldn't, Stacy being afraid of me driving and me living in an unfamiliar place.  I've got to just swallow that fear and do it.  Or decide if I really shouldn't.  

So, this is all that goes on with me.  A lot of neurosis.  A lot of nothing.  I didn't even mention the constant barraging from "certain people."  Yeah, the same "certain person."  She is who she is.  Hmmm, wonder where the neurosis comes from?

Oh, I went to physical therapy for my neck.  Can I just say holy cow, when a person with fibromyalgia gets a massage it hurts like hell!  I may not be able to continue to go for PT because I may have used up all of my therapy for balance.  They are supposed to look into that and let me know.  

I eat, therefore, I crash...

I guess this shouldn't be as startling as it is.  it just came up so suddenly.

Stacy and I have been eating so well.  as I've been lamenting, I haven't been losing much weight, even though I've pretty drastically changed my diet.  and by drastic, I mean I've all but eliminated anything white or carb-like or starchy from my diet, almost no sugar (a little in the morning in my coffee...I have flavored creamer.  we tried eliminating that, but coffee was just soooo boring!).  I also didn't give up ketchup when I eat hamburgers.

we have substituted whole-wheat pasta when we do eat pasta, but that isn't often.  we also have learned what a portion is.  we had been eating enough for a small village before then.  those days are long gone.

so, now our meals are basically meat and vegetables with salads.  we eat a lot of chicken.  I'm still not hungry much during the day.  when I do eat, it's cottage cheese, sometimes tuna.  you'd think I'd be 90lbs.  you'd think.

anyway, Stacy had decided that the holiday weekend was reason enough for "cheating."  sure, I was in.  I didn't miss "food food" as much as I missed the other contraband she brought into the house -- ice cream.  even though we had pizza one night for dinner (I didn't eat too much of that), I did eat the ice cream three nights in a row.

this morning, I had my first "drop attack" in months.  it came out of the blue.  one minute, I was letting out the dog, and the next, I was on the floor.  it hurt like hell, too, because I fell on top of a planter (square in the middle of my back).  I was holding a cigarette, too, so it was a good thing Stacy came running.  she said I almost burned my face.  no fun.

so, what have I learned from this?  well, I guess that somehow sugar is related to my vertigo, and, more importantly, my drop attacks.  how, I still don't know.  I guess I know what I have to do, sort of.  keep monitoring what I eat.  obviously it's working.  still, I'm not dropping the weight, though, so it's not enough.  and I still get the occasional dizzies.

my guess is that I need to see some kind of endocrinologist.  but not just any endo.  the right one.  someone who actually knows about this stuff.  this is going to be a hard find.  I'm going to bring this to my online support groups and see if anyone knows of anybody.

I feel like a detective.  eventually, I WILL FIND AN ANSWER.

whose time is it anyway?

and so, Monday was my physical.

I wasn't quite fond of the idea of going.  less so, was I fond of the doctor who was performing said physical.

however, it was suggested by the nurse practitioner at the neurologist's office, that I have a physical done to have different things checked out (I felt like a faulty vehicle), and so I went.

this was my agenda: discuss my horrible joint pain which I think is not just fibromyalgia, discuss my inability to lose weight despite my hardly eating anything, discuss the strange dizziness that isn't my normal vertigo (that the physical therapist said see a cardiologist about (I still don't know about that...), and bring up a, er...personal problem (it's gross, you don't care about that).

this was her agenda: do I get a womanly check-up every year? (I'm a little behind, ok). mammogram? (same, but, for my age, it's not crucial, so back off), and stop smoking (of course she needs to say that).

she was casual, but really casual.  relaxed is ok, but there is a point where, for me, it gets uncomfortable when health care professionals are so laid-back, they fail to be working (almost) and they are barely going through the motions.  like she was saying to me by her actions, "I really don't want to be here, but..." (hey, who does? it is her job, though, make an effort, huh?).

my girlfriend has this saying, she picked up along the way about not taking other people's inventory.  basically, it's along the lines of don't judge people.  I used to be that way.  but I'm becoming more judgmental as I come into contact with more people.  I also find it amusing that she uses that line, because she is one of the most judgmental people I know, but that's ok.  I love her just the way she is.  anyway.

the physical was over and done with in the blink of an eye.  I felt like I was bothering her every time I asked her a question.  I managed to squeeze a few of my concerns in, but not the major one, the dizziness.  she made me feel so disgusted and, well, stupid.  (this seems to be a common theme for me, people making me feel stupid).  it was all I could do to keep in the tears.  I actually couldn't.  as soon as she left the room, they came and I cried as I undressed for my EKG.  Later, I cried even more in the bathroom.  I resolved never to go back to her again.

so, added to the list of doctors who made me feel that their time, somehow is more "valuable" than my time.

to quote Dennis Miller, "I don't want to go on a rant here, but..."

having the letters MD (or DO, as it were, in her case) at the end of your name, does not make seconds, minutes or hours have any more value than anyone else.  you may make more money than other people, but, at the end of the day, we all have the same 24 hours in a day, the same mundane tasks to perform during them (everybody eats, sleeps and goes to the bathroom), and, eventually, every single one of us will die.

yeah, that's where she took me.

this whole journey, this being a patient thing, this going from a "healthy person" to a "less-than-healthy" one and seeing doctor after doctor, healthcare person after healthcare person has made me so damned sensitive to, well, everything, every part of the process of getting a person healthy; the language that's used, the atmosphere in which one is treated, the timeliness of getting results, the amount of support available.

it seems to be lost on me.

first of all, my condition isn't life or death.  it's life-affecting, but I'll live.

second of all, NOBODY CARES, or seems to.  maybe because of the first thing I said.  and also probably because the percent of people it affects like me are small.

third of all, what I am going to do with this information?  even though I realize that this stuff applies to people not only with balance disorders or fibromyalgia, or whatever else I may or may not have (or the people I've worked with...they've been treated quite poorly as well), and this is a far-reaching problem, I am not sure how to get my voice heard.  I feel like I'm one person, one small voice yelling in a throng of so many apathetic drones who just go on with their day-to-day existences UNTIL

it matters to THEM.  or THEIR families or people THEY know or love.

I suppose that's one reason I write this blog.  and hope it matters to somebody.

I WILL write my book, too.  because that will mean so much more.

solitude

I'm lost.

I have no idea where I'm going or what I'm doing.

you know what?  nobody cares.  if I didn't have kids, I wouldn't, either.

it's a struggle now for me to care.  but I have to, for them.  that's actually a big step for me.

however, that still leaves me with now.

for the most part, I'm not dizzy.  I do lose my balance every so often and once in a while, I will have a weird spaced-out feeling, if I wait too long to eat or if I move my head funny.  but I'm doing pretty well for now.

probably because I'm not eating much, and what I am eating is much healthier. and the weather is good.

I'm barely seeing a difference in my weight.  this aggravates me to no end.  if a "normal" person ate as much as I did, they would be dropping at least 5 pounds a week.  in fact, I can see Stacy shrinking next to me.

I don't care about eating.  I don't care about much.  I guess I'm probably depressed somewhat.  not all the way, because I don't want to sleep all day and I am still concerned about being clean.

I would be afraid of going on medication to try to elevate my mood.  the last thing I need is to be more dizzy.  but this sucks, too.  besides, I don't think a pill would fix this.  getting out of the house would.  but where will I go?

a walk?  to where?  I'm trapped.  I hate it here.  I have no one to talk to.  nobody cares enough to check in on me. I'm tired of being the first one to call or make contact.  I may be lonely but dammit I will not beg.

yeah, I'm crying.  I haven't had a good cry in a while.  maybe that's what I needed.  I don't know what else I need, though.  guess I'll keep on looking.