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.

quiet rebellion

I've pretty much been doing things my way lately.

last time I was at balance therapy, Stacy told me I don't have to do this for the rest of my life.  so, if I don't, why am I doing this?  I'm feeling pretty good.  seems like the crisis is over for now.

and, since she told me that my last visits would just be to tell me what to do at home, and since going is so inconvenient for all involved, well, the last visit just hasn't happened at all.  goodbyes are just so hard.

I haven't been going to talk therapy either.  I just haven't been "feeling it."  it's been a few weeks and my therapist hasn't called to check in on me.  shows how invested he was in me.  movin' on.

I have been trying to move more, read more, write more, look for work (can't find the right situation yet), eat healthier.

I've been doing freelance writing.  strange experience.  very constricting, but I am earning (a tiny bit of) money.

I'm trying to get involved with online things.  I'm hosting a twitter chat on May 29th, btw.  3:00 EST.  On the DSM-5.

I feel like I'm starting to take a tiny bit of control of my life.  just a tiny bit, though.  I've got a long way to go.  I think if I find something meaningful to do all day, that will help.  the writing helps, but it's not enough.

I will keep at this.  what choice do I have?

good to know

I met with Stacy on Monday.  but while I was waiting to see her, I asked one of the receptionists how many more visits I had.

I may have explained this before, but with my insurance, I'm entitled to roughly 20 visits.  after that, my therapist can assess me and extend my therapy for roughly 20 more, but that is all that I am entitled to for the entire year, regardless of my medical need. so if I get hit by a truck and then need more physical therapy, apparently, I would be out of luck until a year has passed.  so it is in my best interest to not use up every single one of my physical therapy visits just on balance therapy, just in case.

so, the receptionist told me, "oh, this is visit 20 of 20."

really?  when did they plan on telling me this?  wow.

I felt like someone had pulled the rug out from under me.  I wasn't ready yet.

other times I had gone to physical therapy, I had known in advance when my last day was coming.  I usually brought something in for the therapists as a "thank you" gift, like cookies or something.  one practice awards "graduates" with shirts and other tokens when they have completed their therapy.  this seemed a bit cold.

I had been seeing these people for months.  joking with them.  crying to them.  and now, because of an arbitrary number set by the government, it was suddenly going to be over.  one of my few links to the "outside world."  I know I'm taking this way too hard, but my world is very small, and it was about to become even smaller.

so, Stacy came for me and took me to a treatment room so we could discuss my progress.  she gave me a few questionnaires to fill out, rating scales which measure my confidence and depression levels.

funny thing about that.  since I've studied about these kind of tests and administered them myself, I'm always guessing at what "they" are looking for, and not always what I really feel.  it's a terrible way to be, I know.  but it's like trying to unlearn to read.  you can't do it.  try it.  just try to look at a page of written words without reading them.  yeah, I thought so.

well, I knew that I couldn't seem too depressed and I had to show more confidence than the last time I took these tests and, well, maybe I have progressed somewhat anyway, I don't know.  it's hard to be honest when you are trying to not be honest.

in any case, Stacy was happy with my answers, and that's what matters.  right?

she told me that we will have a few more sessions where we will plan my dismissal.  she'd make sure I was all set with home exercise.

that's when I told her about my little experiment with home exercise.  I was ready for her to tell me it was anxiety again.

instead, she told me that I should get a cardiac workup, that what I described to her sounded cardiac.  I'm not gonna lie; I started crying.  not because I'm worried, but because I felt like an ass.

I don't even know why I felt stupid, though.  I guess because I have let doctors push me around and to the side so long and dismiss me, even when I feel things like this.  well, why shouldn't I?  I let other people do it, too.

I told her I would finally get a physical and go from there.  I also asked her if it would be possible to see the neurologist sooner than the end of June.  actually, I am seeing the nurse practioner and I want to see the doctor.  I didn't think that was unreasonable.  neither did Stacy.  she told me to tell this to the receptionists (p.s., they couldn't find me an appointment with him).  we then had our normal session and I was on my way.

since then, I've made an appointment with my primary care doctor for a physical. I've been exercising some. other than that, business as usual.