then again maybe not...

so, I took a part-time job.

it was a seasonal job at Target.  I figured it was a good way to get my feet wet in the workforce.  and, if it didn't work out, 1) it was seasonal, so it didn't matter anyway and 2) it wasn't in my field, so it still didn't matter anyway.  but if it did work out, they were hiring a few people to stay on, so I would have a little job, and we needed the money and I am going crazy being in the house.

but, if you noticed in my second sentence, I used the word, "was."

I had had the choice of cashier or sales floor when I got hired and, considering my vertigo, I figured sales floor was a better choice because I figured standing in one spot for hours and hours would not work out and at least with the sales floor position, I'd get to walk around the whole time.

well, was I sadly mistaken.

I may have been right about the standing in one spot being a bad thing, however, I had no idea what the sales job actually entailed.  I found out.  and I didn't last past 2 days.  3 if you count orientation.

I had to constantly walk and put things on the shelves all day long.  walk.  bend.  stretch.  lift.  walk.  stand.  walk.  bend.  walk.  you get the idea.  about 2 1/2 hours into the shift, my feet hurt so badly, I wanted to scream.  By hour 4, my head was swimming.  By the end of the shift, I am not quite sure how I managed to get myself out of the store, but every nerve in my body was on fire.  fibromyalgia, vertigo, and just generally being out of shape...bad combination!  Especially for a job like that.  I thought if I tried again, I might work myself up to being able to complete the shift without pain.  It was just as bad though, if not worse.

although I felt guilty about it, I had to let the job go.  I still feel like I've been hit by a truck, but I'll recover.

I spent all day today looking for some other kind of work.  something less physical.

oh, and I drove the other day, too.

baby steps.  I'll get back to being me, I think.

normal? for me, anyway

so, yeah, I've neglected this blog.

I haven't had much to say.  still get dizzy.  but I'm not in a "dizzy crisis" as those of us in the dizzy world call it.

I'm at a somewhat "normal" stage of dizzy.  it's kind of weird when you think about it.

every day, I have to consider the levels of lights in a room.

every day, I have to be careful about how I turn my head.

every day, I have to be mindful about bending down too quickly, or getting up too quickly.

every day, I have to remember to eat, even though my medications leave me with no appetite.

it's not like these things are earth-shattering or life-threatening.  they are just inconvenient.

the fatigue is draining, though, and wearing  and the constant isolation is depressing.

I want better for myself.  I just don't know how to get there yet.

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.

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.

disturbing development

so, I'm supposed to be exercising.

I thought I'd do that yesterday, make a real good effort.

I went through my CD's and put in the Scorpion King Soundtrack and started stretching.  so far so good.

then crunches...no problem.  then, I was really getting into it, and decided to do aerobics.

I figured that, in order to avoid vertigo, I would do whatever exercises I used to do standing, while lying down.

made sense to me.

so I started moving my arms and legs around to try to get my heart rate up.

then, it hit me.

a wave of dizziness like I'm not used to.

this was not regular vertigo.  this was different.  like I felt like oxygen was being cut off from my brain.

yes, I know what that feels like.  and it felt like that.

I lay on the floor, waiting for it to pass, wondering what the hell is going on with my body.

why did these motions bring on this particular reaction?

was it the movements of my arms?  or the bringing up of my heart rate?

I had to know.  so I did it again.


after less than a minute, I had the same reaction, only far worse.

I thought for sure someone would find me dead on the floor.

I lay there unable to move for at least a song and a half.  that would be, what, 5, 6 minutes?

I never completely lost consciousness, I don't think.  almost though.

I thought of calling my partner and telling her to come home.  but I figured, why?  what's anyone going to do about this?  I also thought about calling the neurologist but vetoed that idea as well.  I'm going to physical therapy on Monday.  I figure I'll talk to Stacy about it.  hopefully I can get my point across to her about how this went down and she can tell me what to do next.

I have to admit, this has me a little shaken.  I mean, deep down inside, I honestly don't worry about my health because I figure what will be will be but in the end, I just want to get better however;

this now leads me in another direction.

I always figured whatever is "wrong" with me is basically this vertigo crap along with a bunch of arthritis and, yeah, the fibromyalgia, and, while it is all aggravating and tiring and painful, none of it is life-threatening.

but what the hell is THIS??

MRI results

well, now I know why I've been getting headaches and neck pain.  I have 3 herniated discs in my neck.

the tech on the phone told me this could wait til my appointment in June.  really?  that sucks a little.

lucky for me I already am going for physical therapy.  I hope they can do something for it there.

everything I have read doesn't say, "hey ignore this thing."  it says treat it or it can wind up a surgical matter.

it says it causes the weakness in my arms and legs that I have, the numbness in my hands, the horrible headaches, the DIZZINESS.

oh, but let's wait til June.

sure, it's not HIM.

sometimes doctors suck.

perhaps I would like to go on with my life.

maybe even, I don't know, get better?

now that I have a clue what is wrong with me.

just knowing what it is isn't going to make it go away, jackass!

the tech on the phone didn't know I was going for physical therapy...so what if I weren't?

I was just going to WAIT until June with my thumb up my ass?

I will discuss my results with my therapists (because they won't know), but I don't know if they can do anything without talking with the doctor.

more wasted time, more wasted visits.

I'm just a little frustrated now.

see, Medicare only allows so many physical therapy visits, and I think I am approaching my max.

so I feel like I'm working against the clock.

and tonight I'm only going to see an assistant, not my therapist, so he won't be able to do anything.  I know he won't.

I'll still bring it up.  let's see what happens.

pain in the neck and stress

I saw my PT on Monday.

we did strength training along with VOR.  it wasn't easy.  in fact, it was hard.

not all of it.  parts of it.  specifically, the parts where I had to work with weights.  here's what happened:

I was minding my own business, lifting 6 whole pounds up and down over my head repetitively and it was getting harder and harder, but I kept going because I knew I was out of shape and I wanted to just get through the exercises and I didn't want to look like the out-of-shape piece of crap that I am and I felt the wave of dizziness just start to surge over me, but I kept on going and going because I figured if I didn't do something, eventually I was going to end up a big blob and I just wanted to finish and I did.

then I put the dumbells onto the rack and let the dizziness take over.

one of the therapists, Lauren, saw me and asked if I was ok.  I know they have to ask, but I hate when they ask when you are ok when, clearly, you are not ok.  I said not really and sat down fast.  She got Stacy, my therapist.

they got me water and tried to dissect my vertigo attack.  I felt tears come.  I had driven to therapy that day, which was rare, and I didn't want to leave dizzy.  they now thought I was "all worked up about driving" and that was why I got dizzy.  I knew that wasn't the case.  I now was "worked up" about becoming dizzy, but driving there in the first place didn't make me dizzy!!

when I caught my breath, I said to Lauren that the dizziness came after I lifted my hands above my head with the weights, and that this happens at home, too (without weights, obviously).  I also explained that I have neck problems and had gone for an MRI recently (still waiting on results, don't ask!) and sometimes even turning my head will make me dizzy.

she said (surprise, surprise) that neck problems can cause dizziness.  I knew this.  I remember reading this in someone else's blog and then reading more about this online.  here is some information now: cervicogenic dizziness

so after the dizziness passed, for some reason, I felt stupid.  for some reason, I usually feel stupid.  I don't know why.  I have no control over the dizziness.  it is a physical thing.

maybe it is because they (the therapists) talk about anxiety while the dizziness is happening, or right afterward. or they say things like, "open your eyes,"  which, is probably good advice.  it probably makes you less dizzy and makes the attack faster.

and it's not like anxiety is the worst thing in the world to have.  people live with it every day.  it is a common human response to stressful situations.

however

sometimes

it's

not

anxiety

and that aggravates the crap out of me.

it brings me back to a terrible, awful, horrible place in my life that I'd rather never visit again.

well, yeah, now that I've mentioned it, I will say it here, even though I now want to cry just typing it.

I probably will cry before this entry is finished.

a few years ago, I was, well, in a bad way.

in a mental hospital.  people should not be ashamed to say that.  but, society, the way it is, go ahead and judge me.

I was depressed, I was getting help.  anyway...

while I was in the hospital, I was getting these vertigo attacks.  I've been getting them for 11 years on and off, so it stands to reason.

on top of that, I was under tremendous stress (in a mental hospital, away from my family, depressed), AND, I was being pumped full of different medications to try to stabilize my mood.  it's common knowledge that medications can also make someone who is susceptible to being dizzy, dizzier.

well, the thing is, when I would have these attacks, the hospital staff believed I was "acting out."

if anyone has ever seen movies or TV shows about people in mental wards, you know what they do to patients who "act out," right?

I would be yelled at, grabbed, thrown on a bed and pumped with sedatives.  nice, huh?

this continued until I demanded to see a neurologist who whispered to me, "I believe you."  but not before my stay was extended way longer than it should have been.  they thought my "funny walk" was on purpose, too (it was an unsteady gait due to constant vertigo).

so now you know where I'm coming from.

sometimes when people say something is physical, it's physical.

emotional stuff can add to it.  and does, oh boy does it!

I wonder if I am ever going to get to the bottom of everything that is going on with me.

I wonder if there is a bottom.

what's a girl to do?

I've been having one of "those" weeks.

the walls are closing on in me.

to paraphrase Homer Simpson, I've run out of things to do on the Internet.

nothing seems interesting.

I feel like my brain is turning to mush.

the virtual teaching job that I thought I was hired for doesn't seem to be panning out.

I'm not writing as much as I'd like.  when I try, I'm like an engine with old oil in it.  I only get so far before I cease.  no matter how hard I try, I get confused; my words, thoughts stall.

this worries me.  a lot.  more than anything else.

I wonder if I will continue this way.  and if so, what will become of me?

I want to make something of my life.  but what are my options?

I have to figure something out.

what exactly is there out there for a middle-aged, dizzy, well-educated but muddle-headed woman to do all day?

I think this will require some prayer.

eating steady

today, I'm trying something "different."

it's really not different, because I've tried it before, but now I'm trying it again with more knowledge.

I'm going super-low-carb in an effort to control my vertigo.  I'm pretty much following Atkins.

this is what I know:

many years ago, while I was engaged to the Evil One, the two of us went on a very low-carb diet, at that time, to lose weight.  We both did...a good amount, too.  But, what was remarkable was that, at the same time, my overall health improved.  smart as I was, I didn't put 2 and 2 together.

see, at the time, I was pretty much bedridden and going to physical therapy to try to learn to walk again after a major vertigo attack.  I couldn't do much else except sleep and drink these high-protein shakes.  after a few months, my balance got better.  I thought it was a miracle.

by the time the Evil One and I got married, I was able to dance at my wedding.  then, like two schmucks, we ate like pigs on our honeymoon.  I remember collapsing in his cousin's yard.  we thought it was from partying a little two hard.  now, looking back, I know it was from my system saying, "hey, what are you doing to me??"  two weeks after we were married, I suffered a worse vertigo attack than the one I'd had that winter.  low-carb to over-carb...my body was in overdrive.  I knew none of that then, though.  I didn't even know it was vertigo, then.  we were still working with the diagnosis of dystonia (and/or "it's all in your head")!

being part of several dizzy/Meniere's/balance disorders support groups has led me to learn that my blood sugar directly affects my balance problems. this is significant information to know.  for so many reasons.  for example:
1. I should not go without eating.  I already know that I am hypoglycemic; I found that out like 20 some-odd years ago.  so, since my blood sugar tends to get on the low side all by itself, it does not need help from me not eating properly.  that's just plain idiotic.
2. stress does have an effect on my balance disorder.  why?  because stress affects your adrenals which, in turn, affects your insulin production which, in turn, affects your blood sugar.  diabetics, take note...stress affects you, too, in a very similar way!
3. other things I put into my body also affect my balance disorder.  one of them is medication.  another is cigarettes.  one I can't do anything about.  the other...well...let me get the diet thing going first and I'll get back to that one.  it's hard to give up smoking when you live with a smoker.  however, being less dizzy is a good incentive, so...
4. if I lose weight, I will be less dizzy.  why? because my body will function more properly; therefore, my organs will work the way they should.  also, my hormones will be at a more stable level.  so, that brings me back to the topic of today.

I absolutely, positively hate thinking about food.  hard to believe, considering my weight, but it's true.  the Nurse Practitioner said it is probably due to the medications I take.  but, get this, because I actually eat very little, my body holds onto the food I do eat like it's in starvation mode because it doesn't know when it's getting its next food, so, even though I don't actually eat enough to justify my round shape, I maintain it because I have done a fabulous job of messing up my metabolism.  that, and the fact that I don't expend enough calories to boot.

so, I also need to exercise more.  I'm working on that one, too.  it's very hard to stay motivated all alone.

taming the migraine

I got in to see the nurse practitioner Monday.

she made an adjustment to my medication.  she also gave me an "emergency" migraine pill, to be taken when the headache is really bad.  it seemed to work pretty well.

I also went for an MRI of my neck.  this is because I discovered somewhere along the line that my neck has been hurting really badly.  the NP wants to check this out because I have had an old injury on my neck (whiplash) which has required physical therapy and she said this could be responsible for the headaches now.  she explained in detail how the nerves in the neck reach the nerves in the head and into the eye, where I have the most of my pain.  she also wants me to get physical therapy for my neck when I go for the other therapy.

we also talked about my progress at balance therapy (or lack thereof).  she was very frank with me.  she told me that, after 11+ years and this many months of therapy, it is what it is.  some people just have to learn to live with being dizzy.  however, the goal of balance therapy, she told me, is to learn to adapt to being dizzy.  be comfortable with it, if you will.  learn to live with being dizzy.

I'm going to be honest.  I'm not comfortable with being dizzy.  I'm not happy with it.  I'm not accepting of it.

I do understand it, for the most part.  I still don't know how I got it in the first place.  Or why I have to be one of the "chosen ones" who get to keep my vertigo where there are lots of "normies" walking around who get vertigo and it goes away.  It's just like everything else in my life.  If something unappealing and less desirable could happen to a person, it's going to happen to me.  I'll get the weird side effects of medications, I'll get the strange symptoms, the wrong diagnoses.  And, apparently, the less-likely ones, too.  Vertigo forever.  It could be the name of punk band.

I've gone twice to bathe dogs with Stacy.  I held up better than I thought I would.  there were times I got dizzy and tired, but I pushed through it.  if I'm going to be dizzy forever, I have to just cowgirl up and do things dizzy.  Now that sounds like a slogan..."Do things DIZZY"  should I put that on t-shirts?

headache

been laying back with the worst migraine I've ever had for the past 6 days

don't feel much like writing

don't feel much like Easter

don't feel much like anything

posting an Easter cartoon to be festive

Are You Alone?

Health Activist Prompt:


I write about my health because… Reflect on why you write about your health for 15-20 minutes without stopping  (this is yesterday's post...I am cheating a little bit.  I will do today's post later on.)


I am no stranger to being a health activist.  You could say I was born into the role.  My sister has neurofibromatosis, a genetic disorder of the nervous system which causes tumors to form anywhere on the body at any time.  It also gives her learning issues.  As far back as I remember, my sister was "special" and "different."  I didn't have a problem with this; it just was.  In fact, I was drawn to people who were "different," and I had a lot of disabled friends when I was growing up.  I just remembered that everyone made fun of my sister and I hated that.  When I reached out to be the friend to the person with the disability, they were always just as amazing as everyone else.

It was no big shock to myself (or probably anyone else) that I chose to work with the disabled as a career.  What was a shock to me, though, was how badly they were treated by others.  This prompted me to become an even more fierce activist than before. I loved my work and truly respected the people I worked with and for.

So, you'd think that, when my own child showed signs of having a disability, that I'd fall right into the role of activist for her?

Well, Welcome To Holland...

It's not that I wasn't a good or fierce advocate for her; you can bet your ass I was.

I ran to the ends of the Earth for her.

I read everything on Autism and Asperger's that I could get my hands on (at that time there wasn't much).

My family kept telling me "there's nothing wrong with her."  "She's so smart"

(flash-forward 21 years later.  She's still smart, but I think I was right...)

Anyway, I was so alone.  Really, really ALONE.

After a while, I did find support groups, but my kid was never really like their kids.  I have a girl; most Asperger's kids are boys.  At autism support groups, there weren't too many Asperger's parents.  Yet.

And, to top it off, I was split from her father, who also seems to be somehow affected by Autism.

I did it, though.  But if that weren't enough...

I was dropped into another "country"

actually, it felt more like another planet.

When I became sick.

Because: a) I was with a partner who was not supportive (he was actually the opposite of supportive; and b) I couldn't even get an easy-to-understand disease.  no! I had to get some hard-to-diagnose, chronic illness like vestibular dysfunction, which we are not sure exactly why I have and I can't get rid of.

So now, 11+ years into this thing, I am currently stuck in the house, unable to drive, most of my friends don't  see me (thank God for the few who do), trying to do right by my family when I don't know day-to-day if I can stand up straight.

THIS is why I write.

Because otherwise I would explode.

(and so others know they aren't alone in Holland or in their corner of the Universe)

Heal You, Heal Me

Health Activist Prompt:


Superpower Day. If you had a superpower – what would it be? How would you use it?


So, this is one of those topics that people talk about all the time.  And my answer is always the same.

If I had any superpower at all, it would be the power to heal people.

I know that this is not the typical superhero power.  I was all into superheroes when I was a kid.  Spiderman is still my favorite.

But I can't think of one thing to do with super-strength or super-speed or the ability to leap tall buildings in a single bound.

I mean, yeah, I would want to fight crime and all, but crime keeps coming back (isn't that sad?).

But imagine the absolute joy in removing someone's pain and disease forever!

Imagine the delight in knowing their whole life, their family's lives, their friends' lives would be forever healed.

I do.  I'm happy enough when I give my kids or my partner a Tylenol to reduce a fever or a Band-Aid to cover a  cut.

Any amount of suffering that I reduce makes me feel amazing.

To eliminate an illness, to heal a broken bone or quiet a confused mind --

It would be a gift of pure happiness.

Is this a selfish power?  Some might think so.

Don't look so deeply, though.  I don't have such ulterior motives.  It's not a God complex.

Just as I am happy to pass on a smile, a compliment, a hug, an "I love you"

so I'd want to pass this on, too.  To make someone "whole" again.

If I could.  It would be wonderful.

When It's Dark Enough...

Health Activist Prompt:


Quotation Inspiration. Find a quote that inspires you (either positively or negatively) and free write about it for 15 minutes.


"When It's Dark Enough, You Can See the Stars..." - Ralph Waldo Emmerson

Why does this quote inspire me?  Because, the way I see it, it has been dark enough.  Too dark.  Many times over.  But I know I have two choices: give in to the dark or look for the stars.  I choose to look for the stars.

Not gonna lie.  It's not easy.  Sometimes I need reminders about the stars.  I have stumbled around in the blackness and thought I was blind forever.

When weeks turned into months and my feet kept giving out from under me and my head kept buzzing, I saw no stars.

When nobody had answers for why I was as sick as I was, and I sank into depression, my world was dark.

I feel like I've traveled thousands of miles with a candle in a windstorm just to get where I am today, holding a penlight in the middle of the Grand Canyon.

At least I can see the stars out here.

Time In A Bottle

Health Activist Prompt:

Health Time Capsule. Pretend you’re making a time capsule of you & your health focus that won’t be opened until 2112. What’s in it? What would people think of it when they found it?


For people to get the real picture of what is going on with me, they would definitely have to get some of my lovely "B's."  You know the ones.  B's on sticks, B's on checkerboards.  B's floating on my wall.  If I have to keep looking at the letter B, it would make sense that some B's would go into the capsule to give a sense of what my recovery has been about.

My talking timer would be another good addition to the capsule.  It has been a good way to get me to do my VOR (vestibulo-ocular reflex) exercises.  Having the talking feature is like having a coach.  It counts down the seconds in various intervals, keeping me on track.  So, just when I'm starting to sway, it reminds me, "30 seconds, 10 seconds (it skips 20 for some reason), 9, 8, 7, 6, 5, 4. 3. 2. 1 and then the obnoxious noise of my choice plays.  What could be more motivating than that? (hey, my world is small!).

I know I'd stick my Mp3 player in there.  Yes, I'm low-tech...no ipod.  Music will get me happy, though, when nothing else can.  And my choice of songs, very telling.  Some directly from my heart.  Some just full of anger so I can scream my frustration away.  Some so very different from the life I have, the life I didn't plan on.

To really give a picture of me, this laptop would have to go in, too.  I don't know how I could have gotten through this without the Internet.  It has provided me with socialization and support, an outlet for my frustration, a means of expression, a way of knowing I am not alone.  Through the 'net I have found out so much about my condition, how to get help.  I learn just about every day.

Pictures of my family would round out my capsule.  My girls and my partner mean everything to me.  My pets, too; they are with me every moment of every day.

I hope that people would see my capsule and first know how much I value my family.  I don't breathe without their oxygen in mind.  My heart beats for them.

Then, I hope they would know how hard I worked at trying to be "normal."  It wasn't easy.  But I am NOT lazy and this IS real and it's been a long, tiring journey.  Maybe putting together some of the pieces to my puzzle, they'd get the whole picture of who I am.

health activist writer's month challenge

I am always up for a challenge.

I took this challenge last year, but in a more private way.  this year, my blogging has been more consistent and I am very excited to share this with anyone who is interested.

here is the information.  let's go:

Hey everyone - I just wanted to tell you about a new activity I'll be doing this April. The Health Activist Writer's Month Challenge hosted by WEGO Health. I will be writing a post a day for all 30 days. I hope you'll join me in writing every day about health. It's going to be a lot of fun and I'd love to see what you have to say about each of the topics, too. All you have to do to join is sign up here: http://info.wegohealth.com/HAWMC2012 and you'll be able to start posting once April rolls around. Looking forward to writing with you!

did you get the number of that truck?

there's no other way to describe what I'm feeling today except to say that I feel like I've been run over by some large vehicle.

several times.  over and over.  damned thing backed up and used me as a speed bump.

if left alone, I could sleep for two days straight.

I feel guilty saying this.

even though I know I have a physical reason for my physical symptoms.

I know why I feel this way.

it's because I don't hold a job.  and I don't run around outside of the house.

so, when I say I'm tired, I feel guilty.

it doesn't help when I'm reminded of all the things I don't do.

consciously, or unconsciously, it happens.

so, I'm trying to push myself.

it's counter-intuitive.  what I should be doing is resting.

but I can't handle the guilt.

maybe if I do a few things it will be less.

driver's seat

yeah, I drove yesterday.  because I felt like it.

it was time for my appointment and Stacy was sleeping, and I tried to wake her up, but she kept sleeping, so I got the keys and got into the car and drove myself to balance therapy.

it wasn't so bad.  I still know how to do it.

look, last time I didn't drive for SIX YEARS and then got behind the wheel and went.  so this was nothing.

Ed, my therapist was a little shocked.  he is not a fan of me driving.  but then he conceded that it is probably just as difficult to be a passenger (for a vestibular patient) as it is to be a driver.  if not more so.  helllooooo!

when I got back, Stacy was still in bed.  however, later on, she told me that she was quite upset with me. she wants me to be safe.  she knows that balance therapy can be difficult on me.  Ed took it easy on me, by the way, knowing that I drove, and I waited afterward just to be sure.

I was fine.  I plan to continue driving.  it's something I have to do as long as I can, of course.

I'm not an idiot.  I know when I can and when I can't.  yesterday, I could and, obviously, I did.

I have to keep on believing I've got guts.  otherwise, I'll shrivel up in a corner and die somewhere.

that's not to say I'm going to go do stupid stuff.  but I've got to take chances, believe, do, feel, risk.

I'm too young to say this is it.

my kids deserve better.  I deserve better.

so, if right now, that means drive a car, I will drive a car.

who knows what that will mean tomorrow?

working my eyes

I had my first session of vision therapy yesterday.

I'm not sure how I feel about it.

it's weird.  it's hard.  it's fun.  it's frustrating.

the doctor asks me if I see things in 3D.  I'm not sure if I do or not.

my crossed eye has fascinated eye doctors for years.  why?  it's just a weird-looking eye.  yet, every time doctors see it, they want to play with it.  they want to see if I can see this or that.  if I have single binocular vision (I do not).  how my depth perception is (horrible).  if both eyes can see (yes).

who knew that something so annoying and inconvenient and ugly as a crossed eye could be so interesting?

(I've had people tell me it's attractive, if you could believe that!  I don't get it, either...)

I look at lights and letters and numbers and beads.

one eye covered.  both eyes together.  with prisms.  with 3D glasses.

he brought up surgery again.  I listened with 1/8th of an ear.  not really interested.  he said it wouldn't be to straighten my eye all the way, anyway, but just some of the way.  so, um, no.

I got exercises to do at home.  and a nifty clip-on patch for my glasses.

recovering is hard work.  I feel like it's going to take forever.  for something that may happen.

guess it's better than not doing anything, though.

my modified life

so, I wanted a job...

ask the Universe, the Universe shall give.

yesterday, I received a response to one of my job inquiries about a virtual teaching job.

I know I am quite qualified for this job.  I have taught my own classes before.

some really tough kids.  and others, too.  I've been asked back by two school districts after doing leave replacements, so I know I've done a good job in the past.  parents also liked me.  so did the kids.

I've done well on interviews in the past, too.  some have lasted a long time because we talked like we were old friends.

yet yesterday, I was nervous as hell.  I felt like I couldn't remember anything.  I kept apologizing to the woman. it was stupid.

I have years of experience.  I know so much.  yet I can't get it from my head to my mouth.  I hate this.

anyway.

apparently, I said enough intelligent things to pass the interview because I was offered the job.  naturally, I took it.

the pay is decent.  of course, I still won't be leaving my house, still won't be interacting with anyone else but the kids I see on my computer screen, still won't be driving.

but I'll be making a difference, finally.

financially, educationally, morally, intellectually.

it's a start.

trying to 'break free"

I've been feeling restless lately.

maybe it's the unusually warm winter, or my medication (or lack thereof), which has been making me feel better mentally as well as physically, or maybe it's the balance therapy, or maybe it's a combination of some or all of these things, but I've been feeling like it's time to move on to the next "thing," whatever that may be.

so I've been entertaining the idea of going back to work.

I never have stopped "looking" for work, but I never respond to help wanted ads.  I still don't.  not yet.  but I have started looking more closely, trying to match my skills and location and such.

some days I feel more ready than others.

I was feeling pretty good about this decision this week, in fact.  very much so.  I began talking about it with family and friends.  I got a lot of pep talks and advice.  start slow, work part-time, you can do anything you set your mind to, you've done this before...

I have come back from worse, much worse.  my vertigo attacks have left me unable to walk, barely able to breathe, hardly able to think.

I'm not there.  I'm here.  walking, breathing, thinking.

bring on the job, then, right?

I don't know.

because then something so simple as a trip to Lowe's home improvement store makes me doubt all that.

I went there today with my girlfriend to look at patio furniture.  I was in there maybe 10 minutes when I look up one of the huge shelves for cushions and the dizziness starts.

I try to ignore it and go about my business.  even after my partner points it out.  I tell her that I need to try to deal with busy environments.

we keep shopping, but there is no relief from the lights, the movement, the stimulation of the store.  my head keeps buzzing and I start to feel overheated.  I stumble around some.

I don't want to leave even though I am swaying.  I'm tired of my prison at home.  Eventually, though, it becomes too much and we leave.

Stacy can't resist asking, "part-time job, right?"  really?  as if I weren't disgusted enough.

I'm thoughtful the rest of the day.  thoughtful as in disappointed.  I feel like I'm chained to the house.  whenever I leave it, I get over-stimulated and dizzy.  How will I ever get back to a normal life?

sensitivity

yesterday, I worked a lot on VOR exercises (vestibulo-ocular reflex) in therapy.  they are, basically, the ones to stimulate the vestibular system in order for me to do everyday things.  for example, walking down a hallway while turning my head to simulate, well, walking anywhere while turning my head, but this is exaggerated and done over and over again.  I think I walked down the same hallway yesterday 20 times looking up, down, side-to-side and diagonally.  some of the motions made me more dizzy than others.  usually the up-and-down seems to get me.


I read in someone else's blog about something called cervical vertigo.  basically, this is vertigo caused by a compression of the nerves in your neck.  it got me wondering if this is, possibly, the cause of my vertigo.  I have been in physical therapy several times before for arthritis and this can be one of the causes.  also, I seem to have vertigo more when I move my head in certain positions than in others.  I don't know.  something to keep in my back pocket...


anyway, I did other VOR exercises, too, including my torturous B, and others, like standing on a rocking board and on a cushion.  I do all of these pretty well, now.  it's afterward that I may or may not have a problem.  still.  but this is progress, they tell me.  I'm doing better than when I started.  my little voice still wonders if I am just "over" my spell of vertigo for now and will it come back, or is this true progress?  it's scary.  because then things happen like the following:


I go on the treadmill, as I have been doing for weeks.  I'm with a different therapist (the one I was "short" with a while back, but it was all good), so she has her own way of working with me.  she has me gradually work up to the speed she wants me to walk at.  1.3, no problem.  1.5, trotting along.  1.7 this is cake.  then she hits 1.9.  this is still slower than the speed I usually walk at but for some reason, the machine starts making a weird grinding noise that my body cannot handle.  immediately, I go into "overload mode."  my eyes close of the own free will, my face grimaces (it's ugly, too), my muscles start contorting.  I start holding my breath involuntarily.  I am still walking the treadmill, but I start wondering if I am going to pass out right there.  my normal therapist sees this and asks if I am all right.  I find I can't exactly form words to answer her, just parts of words, but I am able to convey to her that I am not exactly "all right."  she reminds me to breathe and focus and comes over to lower the speed on the treadmill.  as soon as she does, the noise goes away and my body immediately relaxes.  an assistant is with her.  Stacy (my therapist) asks again if I am all right and I tell her that the machine was making a weird noise.  before I can say anything, the assistant asks me, "oh, you were afraid of it?" in a kind of nurturing, yet condescending voice.  What?


Stacy had  to go back to work with her patient a moment, and the assistant had gone with her.  I was alone on the treadmill, inwardly shaking my head (had I actually shook my head, I'd have been quite dizzy).  did she actually say that?  it was just a bizarre question...

when Stacy came back to check on me, I had to tell her, "I'm better now.  the sound apparently set me off or something.  she," making crazy eyes at the assistant, "thought I was afraid of the noise."  


while Stacy and Lauren (the therapist I am working with) talked about how the machine probably needs to be serviced, and that's where the noise came from, I didn't get the validation I had hoped for, like, "wow, what a crazy-assed, stupid, ignorant, uninformed, jerky, dumbass response to someone who has neurological responses to vertigo! I'm sorry you had to deal with that.  I'll let her know."  or something to that effect.


maybe I'm a little sensitive.  


maybe it's just that from working with and for people my whole life, I am hyper-aware of what comes out of my mouth at all times when dealing with people at all times.  I remember that they all have a story, a life, feelings, a family.  I don't know why, at this stage of my life, I am still shocked and amazed when other people don't.


and this was nothing.  seriously, nothing.  I know it was nothing.  she was just an idiot.  ok, not an idiot, she just was clueless.  


but, it's the tip of something much, much bigger that I have been holding onto and I am damned near ready to burst.


another post...perhaps another blog...

my eyes and the problems they cause me

my vision therapy evaluation, such as it was, has came and gone.

I guess you can gather from that statement that it was quite short.  far shorter than I thought it would be.  initially, they told me that they set aside 3 days for the exam; two days for the testing and a third day for the doctor to go over the results.

they didn't count on me.  always the exception.  great.

sometimes it's a good thing to be done with tests quickly.  this was not one of these times.

the evaluator was simply unable to perform more than two or three tests with me.  why?  the tests require one to have the ability to see in 3-D.  because I have the crossed eye, I simply lack this ability.  completely.  I've never been able to "enjoy" a 3-D book or movie.  no biggie.  it's not like a handicap or anything.  it does impact my vision in other ways, like depth perception (learning parallel parking was a nightmare!), but, still, this is not a big deal in my life.  since I was born this way, my brain has learned to compensate and I move about in my flat little world.

however, it did bring the testing to a screeching halt.  so, day one of testing was compacted into about 30 minutes.  day two of testing turned into me talking to the doctor about day one and playing around a little bit with some prisms.  there was no need for day three.

so, the doctor basically told me that I have three options as far as vision therapy goes.  option one is to get surgery to fix my eye.  he doesn't do that, but he could recommend someone who does.  then, I would get therapy to go along with the surgery.  I wasn't too keen on option one.  I like my eye.  I don't want to take chances with my eyesight.  I don't know anyone who had success with this.  In fact, I know people who had this surgery and had their eyes be worse off afterwards.  I just read this article about the surgery and my stomach has not stopped lurching since (and this is just the facts, not any horror stories whatsoever):
Eye muscle repair So, I think option one is out.  I've lived with a crossed eye for 44 years.  I think I can live with it for another 44-whatever.

option two is to do nothing at all.  I kind of feel that this is not an option, either.  very often, I find myself hitting walls in balance therapy (not literally!) because the therapists are telling me that certain things I need to work on fall under the auspices of vision therapy.  ok, vision therapist, therapize me!

option three, then, is to come to him for vision therapy.  and that means many things.  working with prisms to try to straighten the eye (if we decide to go that route).  I did tell the doctor that, while it would be nice to learn to park without hitting other cars and objects and to go through fast food drive-ins without taking my side mirrors off (ok, so I haven't completely learned to compensate with my lack of depth perception!), correcting my crossed eye isn't as important to me as addressing the real reason I came to him in the first place; to desensitize me from the things that make me dizzy.  flashing lights.  sudden objects in my visual field.  busy stimulating environments.  can he help fix those?  it was a little difficult to get him on track there, but he seemed to be saying yes, he could.  I mean, he was the guy my neurologist referred me to in the first place.  I have to believe he can help.  he's the "eye guy..."

he sent me home with some insurance paperwork to sign and return and had me talk to the therapist to set up my first appointment after I confirmed that my insurance covered his services.  I have to admit a feeling of leeriness.  it's a money thing, and I hope he knows what he is doing.  something just feels...odd...maybe it's just change.  I do have a hard time trusting people.  I guess I'll give it a go and see what happens.  first appointment in a few weeks.

strength training and inner strength

so now my balance therapy has branched out.

when I go for my vestibular exercise, I get strength training.  it's way harder than I thought it would be.

I squat, I lift dumbbells, I use weight machines, I do resistance exercises.

I need this stuff.

I'm glad I made the decision to ask for this.  even when I am sore.

I'm also glad I made the decision to do this at the same place where I get my balance therapy, even though the orthopedist told me to go to a facility that specializes in arthritis.

fact is, I get dizzy when I work out.  so we have to deal with that.  the other place may or may not have been equipped for that.  besides, doesn't it make sense to have the same therapist track your progress?  and, since my neurologist is treating both my fibromyalgia and my vestibular dysfunction, he can prescribe as much physical therapy as I need.  not have me running all over the place.

when I'm lucky, I also get heat treatments, too.  I say "lucky" because only one therapist seems to give them to me.  not sure why.  I'm not the kind to ask for stuff like that.  I know I'm the patient, and it's my treatment, so I shouldn't feel that way.  but I do.  I feel that it is a luxury, like someone getting a poolside massage.  stupid, I know.

I feel this way about every aspect of my treatment lately...that I am on an extended vacation.  and I know why.

my girlfriend calls it, "people taking my inventory."  everybody does it.  I'm sick of it.  for example, my 9-year-old ASKING ME WHAT I DO ALL DAY!  (seriously??)

I've already mentioned my mom.  she goes in spurts. I'm just waiting til the next one.

I'm the worst offender, though.  because I know I'm not doing as much as I should.  as much as I want to be doing.  and then other people's criticisms ring in my ears and I'm paralyzed.  a self-fulfilling prophecy. I'm trying to work on it in talk therapy, but, until I come to some conclusion, health-wise, I don't know how far I will come.

it is hard for me to make a life for myself at home.  harder still when I get dizzy doing things that used to make me happy, like dancing, or taking long walks or driving.

I'm trying to push myself to do the things I used to do, because I'm unwilling to give up at 44 years old.  I used to live in a black hole.  I'll be damned if I'm falling back inside of there.

yes, for my kids, always for my kids, but for once, a tiny part of me says for ME, too.  (I can't tell you how my stomach churns when I think it...but I'm trying to believe it, anyway)

so, after I write this, I WILL get off the couch and practice SOMETHING.  some b's.  some squats.  play on the Wii.  I MUST motivate myself to move and, as much as I think I can't, I MUST move my head around.  I KNOW it will make me dizzy.  that is the point.  make myself a little dizzy each day and maybe I will be less dizzy someday...

I stay away

I know I should be exercising.

practicing my b's and all that.

but I am at the point where I think it's pointless and all that.

I just got an email in my dizzy support email that said people like me have to do these kinds of exercises every day for the rest of our lives.


really?  I am not feeling it.

because this is not a cure.

it's just bobbing my head around and looking at checkerboards so I'll feel less dizzy some days.


but other days I may fall on the floor.

what a load of crap.

I know I should not feel this way.

I'm just a little frustrated.

I guess because, at this point in my life, I was planning to move on with things, and I'm not.

I had hoped that VRT would be a solution and not just a Band-Aid.

blah.

because I entitled my blog "I stay away" today, I started thinking of this song by Alice In Chains.  This video is just the lyrics.  the first video I found on youtube was quite weird and was about a circus and I don't know what.  it cheered me up a lot, actually, and I'll post it next, if you want to watch it instead...

I liked that one of the lyrics are "I am enlightened..."  I was actually in the middle of writing about that in one of my other blogs.  see you over there.

guess I have to get motivated again...

some concerns

I've been in vestibular therapy for several months now and here's where I'm at.

There are days when I seem to do the exercises pretty well.  And there are days, like yesterday, when a simple walk on the treadmill barely more than ONE MILE PER HOUR can make me go into horrible spins.

It's frustrating and confusing.

As usual, the staff are extremely supportive and encouraging, so that helps.  Still.  I can't help but wonder.  I am going to be among those that cannot be "cured" because it has been too long since the initial damage to my vestibular system?  I know that even if this is true, this time won't have been wasted since I've learned so much here, but I wonder if some day this "truth" will become a "reality."  This scares me.

I also wonder if it is possible that there hasn't been enough done to discover the underlying cause to the dizziness, too, and this frustrates me as well.  We are guessing that the cause is labrynthitis because an ENT said so when I first got sick, but what if HE was wrong?  I mean, does it really make sense that I would remain dizzy all these years from ONE case of labrynthitis?  I can't find much to support that truth.

At the suggestion of the neurologist, I saw the vision therapist.  He decided I would be a good candidate for therapy.  He said it *might* help with the balance issues; it often does in cases like mine.  He actually was very optimistic.  Cautiously optimistic.  I guess he has to be.  There is a lengthy evaluation process, so the therapy won't begin for a while.

I also talked to my "main" physical therapist about adding strength training to my balance therapy.  I also suffer from fibromyalgia and have been having it rough.  I was hesitant about going somewhere else for physical therapy, considering my balance issues.  She thought I was being smart (I did, too!) and said she'd talk with the doctor.

After some hard thinking, I've decided I have to do a couple of things, even though it's kind of "admitting" my state of disability...which...apparently is a bad thing to do.  Anyway, I am in the process of obtaining Medicaid taxi in my area so I can alleviate my partner from having to drive me from appointment to appointment, and so I can make more appointments during the week if I want to.  I also am applying for SCAT (Suffolk County Accessible Transit).  It is a paratransit service that will provide door-to-door pick-up for rides around my county.  I've had this service before; in Florida, and when I lived in Nassau County and, while it is not the ideal way to get around, it can be very helpful and is much more cost-efficient than a taxi.  I also gave my doctor paperwork to fill out to have my student loan forgiven. This was a killer for me.  Since I graduated almost 13 years ago, I think I've been able to work a combined total 4 years...IF that.  What a disaster.  No one plans for things like this.  I certainly didn't.  And now, I keep having my loan put into forbearance and deferment over and over again because I certainly can't make payments while I'm living off of social security disability checks.  Meanwhile, the interest has ballooned my loan to well over $40,000. It may as well be a million.

While these things are, in and of themselves, quite depressing, I'm dealing pretty well most of the time.

I did, however, have to field this conversation with my mother yesterday, and it threw me for a loop:

MOM: "I saw something the other day about domestic violence.  When you are ready to go back to work, I think that would be a good field for you to go into, considering all you have been through..."

ME: "I definitely think I would volunteer in that field, but, considering everything I've had to do for Tara (my adult autistic daughter), I know I that I would go back to what I HAD been doing."

MOM: "What you HAD been doing What? Sitting on your ass?"

Now my stomach tightens.  I see red.  I try not to throw the phone through my glass doors.

ME: "I said what I HAD been doing.  You know perfectly well what I mean.  Working with developmentally disabled individuals.  You know, when you get like this, I don't want to talk with you anymore..."

MOM: "Oh, I didn't hear you..."

ME: "You heard me perfectly well.  You even repeated exactly what I said.  What I HAD been doing.  Not what I HAVE been doing..."

The thing is, my mother sees my not working as a FAILURE of some sort.  Same for my not driving.

It's hard enough for me.  It's absolutely TORTUROUS when I don't have the support of someone so important to me.

Does she think I don't WANT to work?  Does anyone think I WANT to be dizzy?  To have my thoughts scrambled constantly?  To fall out of nowhere?  To be a shadow of my former self?  To be dependent on other people?

I used to be Supermom!  At one time, I worked full-time and went for my Masters degree and was in the Community Choir and volunteered for my Church while raising two kids.

This illness has invaded my head and my body in such a way that I can't think and don't know which way is up.  I don't want this.  AND I AM DOING EVERYTHING IN MY POWER TO TRY AND FIX THIS!

However...it has been so many years, with so many WRONG treatments, WRONG medications and just so much time has passed.  What if it is just too late?