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!