It all comes together

I don't know how many times I've seen that Botox commercial.

But, that night, as I listened to the announcer warn about the possible harmful effects of using the toxin, one thing jumped out at me - difficulty swallowing.

I heard something else about how the symptoms can take days to weeks to appear and then I was really intrigued. I had to read further. I consulted Google and found more of the same. 

That one piece of information was golden. It solved a major piece of the puzzle that had been my dizzy journey. 

It set in motion more research, which about sewed up the loose ends as well. But first things first. The swallowing.

When I first started with the dizziness and balance issues, my facial muscles would constantly move. My jaw would work itself back and forth and my right eye would continuously close. Although it clearly became worse when something would startle me or make me more dizzy, at the time, no doctor understood or could explain it, let alone treat it. We decided to try something unconventional at the time. I went to a practitioner that my husband at the time had a lot of faith in, because she treated a variety of problems, and was starting to work with Botox in her practice. She was not a vestibular specialist, or a neurologist or an ENT. All I knew about her practice was that she had treated my husband for weight issues. But she was willing to try the Botox and I was desperate enough to try anything. 

I remember getting some relief from the Botox; its paralyzing effects had helped curtail the movements at least. I seem to remember going for more than one treatment. Because this wasn't her area of expertise, she had to figure out how much toxin to give based on what results she expected. I completed my shots and that was that. Or so we thought. At least now I know.

The difficulty swallowing seemed to happen all at once. This was all so long ago, and I've lost many of my journals from back then, so I couldn't say how long it had been since I'd had the Botox treatments. At the time, that didn't matter, because the Botox wasn't even on our radar when the swallowing problem started anyway. All I knew was suddenly food didn't want to go down my throat. And when I got something down, my throat muscles would keep moving in a swallowing motion. It was terrifying. We had gone to the ER, but the staff there treated it first like an allergic reaction, then, when Benadryl alone wasn't "calming me down," they attributed to panic. Common assumption when it came to most of my symptoms. 

Doctors didn't know what they know now about Botox's effects. Hell, I found it difficult to find a practioner who was willing to try it with me. I can't even say for sure if she was a doctor. 

For years this remained an anomaly in my medical history.  Nobody could figure out why it happened, so it was set aside for the most part.

Then, the commercial. The research. And that part of the puzzle was filled in neatly. But then, I needed more. I had to have the rest. 

I started with the diagnosis given to me by the first ENT to test and treat me, labrynthitis. Considering how quickly the dizziness and loss of balance came on, it still fit, although it does suggest a loss of hearing as well, which I did not experience.  My primary physician at the time had originally given me a slightly different, yet more accurate diagnosis of vestibular neuritis. Vestibular neuritis produces similar symptoms to labrynthitis, but without loss of hearing. All would have been fine and dandy right then, but nobody seemed to know much about the condition at the time. At least none of the many (and there were MANY) healthcare professionals I had the misfortune of bringing myself to.

It took about 14 years of doctor-hopping, therapies, tests, medications and endless dead-ends, research, tears, prayer, and self-doubt for me to pluck the answers from the mistakes and misinformation. But the answer I was looking for was actually there from the beginning. It was just so simple (and complicated) that it was ruled out so long ago. 

The vestibular neuritis, the original diagnosis. At the time, I was told I was "taking too long to recover" so it had to be something more. My doctor was loading me up on Valium and when I wasn't sleeping, I was dizzy. She figured that there was nothing more she could do for me, and sent me to one of countless specialists who would examine me and incorrectly treat me for illnesses and disorders I did not have. 

So many years. So many doctors. Nobody could figure this thing out. I was told over and over again that I may have originally suffered labrynthitis or vestibular neuritis, but neither of those were chronic conditions, nor should they be coming and going as they were, nor do they cause any symptoms but the classic dizziness, loss of balance, etc.

I have learned that all of these assumptions about these conditions are completely false. 

Both vestibular neuritis and labrynthitis can become chronic conditions. Their symptoms can intensify and lessen and can occur as sudden attacks. People who live with these on a daily basis can suffer a myriad of symptoms beyond dizziness including headaches, difficulty concentrating, widespread body pain (from the body's constant "micromovements" which attempt to deal with being off balance), depression, difficulty walking, vision issues, etc. 

So, do I really have migraines, depression (or bipolar depression, depending on the doctor) and fibromyalgia? All of these diagnoses came AFTER the vestibular neuritis took over my life. That may explain a lot of things.

I do seem to recall a couple of doctors down the road who did acknowledge my dizziness, but insisted on calling it BPPV (benign paroxysmal positional vertigo). While they were not incorrect, they were just not being complete. The BPPV is secondary to the vestibular neuritis.

I have found good, reliable information from places like VEDA, and support from others who have been down a similar path as I. I also was fortunate enough to have found a few doctors and therapists who knew something about chronic dizziness. I have to say, though, it was hard. Really, really hard.

It still is hard. 

Nobody still believes or understands what being dizzy all the time is. And people remember a lot of the misinformation the old doctors told us. They'll refer to my dizziness attacks as "seizures," or think my facial muscles moving is dystonia. Or worse, they'll think I can just "power through it." Or "if you want something bad enough, you will get better." In other words, it's completely within my control and/or in my head.

At least now I have validation. I said I was dizzy and, dammit, I was dizzy! I AM dizzy! 

And when people ask me, I can confidently tell them that I have vestibular neuritis and BPPV. 

Perhaps it IS all in my head...

Guess you can tell I just had another conversation with Mom.

"You know, Karin, your motion sickness and dizziness in the car is probably anxiety about driving."

(because, you know, she suffered from panic attacks when she was younger. so that MUST be it. never mind the fact that I had a job where I drove all over the county and had NO problems then. and I used to work in a school that was a 25-minute (easy) drive away from my house when I lived in South Carolina. AND I have driven a 15-passenger van. CLEARLY I am anxious about driving!)

"You know, if you try you can overcome this."

(overcome WHAT? a physical condition that I am suffering from? MAYBE if she tries really hard, she can see out of her blind eye? I mean, if it could work for me, it could work for her!)

"Because you know, not driving is SUCH a disadvantage!"

(what do you even say to that? that I am less of a person because I don't drive much? I don't know, when someone gets dizzy in a moving car, PERHAPS driving is not the best idea. HOWEVER, I am a smart and resourceful person. I can figure out what to do to get where I need to go.)

Just for the record, I don't get in the car expecting to get sick or dizzy. I get in the car with my destination in mind. I don't worry about it, I just go, as a passenger OR a driver. It just happens. Sometimes, not every time.

But enough of that stupidity. I had a visit with the neurological nurse practitioner last week. First of all, SHE took my symptoms seriously. She told me it is COMMON for people with my condition to have these issues.

She prescribed Neurontin for me to try. So I am trying it. Guess what? I went in the car a few times and realized LATER that it helps! As a passenger, at least. I think I drove once locally since then and that was ok, too. I haven't tried a long trip yet.

ALSO, she told me that the nature of my illness comes from an issue with my brain stem. I have NO idea what that means. So I looked it up.

I don't know if they are calling my condition migraine-related vertigo (which is in the brain stem) because I DO have migraines, OR if there was something else that messed with my brain stem. Like a stroke. Because, you know, when I first got sick, it came on suddenly AND I had problems swallowing AND I couldn't walk.

<shrug> sounds like it's something, though. And it IS in my head, right?

Carving Out a Life for Myself

I have had to make some adjustments in my lifestyle.

I tried driving; at this moment, I get nauseous and dizzy if I am in the car too long.

I tried getting jobs; it seems almost anything I try makes me dizzy and exhausted.

It's stupid, really.

It's not like I have some ominous disease. Yet the vestibular issues combined with fibromyalgia make my life difficult.

So, I have been trying to work around them.

I stay out of the car when at all possible.

And now, I have been working a lot from home.

I do online tutoring and freelance writing.

I work very hard for my money. I just do it in my bedroom (wow, that sounds bad!).

I will go to the neuro on Friday to talk about the motion sickness. However, I don't think there is much they can do.

The one thing I miss is socializing.

I need to find some online communities that I can call home.

Facebook ain't it.

I don't have anything against Facebook; I just feel like I am outside of everybody's world there. I guess because mostly all of my Facebook friends have actual lives.

I will figure this part of my life out, though. I managed to figure out the job part.

Eventually, I will have something close to a life.

dizzy rules

I haven't written in a while because things have been stable. And by stable I mean pretty good.

Yes, I have symptoms every day, but that seems to be the way things are.

I used to think that 13 years is a long time to be dealing with chronic dizziness, but I have talked with people who are into 20+ years with it.

In order to keep things from getting too out of control, I have to live by a few rules. I'm sharing them with all of you, especially those in dizzy hell with me. They are:

1. Don't turn your head too fast. Just don't. No matter what you hear or see. I break this rule all the time, especially when I drive because I need to see my blind spot when I pass people.

2. Don't get up and down too fast or too much. Usually doable, but sometimes I still forget.

3. Don't bend if you can possibly avoid it. Makes doing housework, shaving my legs and putting on footwear quite difficult.

4. Don't nod along to people when they are talking. A VERY hard rule for me to remember.

5. Avoid extreme temperatures and weather. Both searing hot and freezing cold temperatures will get my symptoms going. Forget wind. Wind is not my friend. Especially freezing cold wind. Rain? Rain is not the greatest, either, particularly when it falls on my head. And the atmosphere is not comfortable before and during rainstorms. Ice and snow on the ground is a joke. I keep threatening to move South just to avoid snow. However, then we have the extreme heat, so how do you win?

6. Avoid overly salty meals, especially with foods containing MSG. I adore Chinese food. However, no matter what restaurant says that they cook without MSG, they do anyway. Trust me on this one. Also on the "bad" meal list are foods like ham, hot dogs, chips, pretzels, things like this.

7. Avoid too much caffeine. I used to avoid all caffeine, but I missed my coffee in the morning. Sometimes it affects me more than others. I have to live with this or go back to cutting out all caffeine again. Don't even mention cigarettes. Of course I am supposed to quit, for obvious reasons, but also because they are another no-no for people with balance issues. And I haven't. That's my bad.

8. Get enough sleep. I am also living with fibromyalgia and migraines, so I NEVER get enough sleep. Too much sleep is not enough sleep. However, if I get less than I am used to, I can count on having the next day being horribly symptomatic.

9. Avoid alcohol. Another treat I have to limit. I get the spins if I have more than say, two drinks. Sometimes even at one. I pretty much don't ever drink anymore. That one is just not worth it.

10. Try not to get too stressed out. This one is a complete joke. I have a lot of stress in my life (who doesn't?). How do you cap that?

11. Avoid busy environments. Like grocery stores, warehouse stores, malls, arcades, carnivals and such. This really limits where I can go and how long I can stay there. And I truly used to enjoy all of those places. Forget carnival rides, even the merry-go-round (it goes in circles). Oh, any EVERY concert these days has the potential of having a light show.

12. Don't let anyone touch your face or head. Number one, I have kids. My little one especially is always touching my face or my head. It's like a magnet for her. Number two, I work with people with autistic spectrum disorders. They, too, often touch my face. While I can explain to my daughter not to do this (whether or not she remembers is another story), I can't usually explain this to most of the individuals I work with. Other people seem to want to touch my face and head, too. I don't know why. Maybe I just missed the memo.

14. Don't let anyone point in your face. See rule #12.

15. Don't let your blood sugar get too low. As fat as I am, my appetite is like a canary. I go through most days eating one meal, sometimes two. Don't do this, if you can possibly help it. It is a double problem: if you don't eat, your blood sugar drops and you get dizzy. If you wait too long THEN eat, your blood sugar spikes and you get dizzy. I'm working on this one.

Imagine going your whole life like this. Perhaps some of you already do, especially my fellow dizzies. No fun, is it? However, along with these rules, keep the following in mind (it may help maintain your sanity):

1. One bad day does not equal the rest of your life. You may have been symptom-free for weeks, months (years?) and then suddenly wham! you're riding the dizzy train again. Focus on the good days and remember you will be there again. This, too shall pass. (I should get that tattooed on my body somewhere)

2. Try not to take it personally when other people don't "get" your illness. They can't see it. They haven't experienced it for themselves. Many people don't give a damn. Oh, and how many think it's "in your head"? It's so hard to hear that, but you just have to ignore them or try to educate them, and realize THEY are the one with the problem, not you. You simply have a vestibular problem. This is quite easy for me to say, way harder for me to put into action. Still, I know I'm right.

3. You don't have to put up with inferior medical treatment. If you have an unpleasant or uninformed doctor, nurse practitioner or physical therapist, find a new one. If you have to go through a dozen medical professionals until you find the right one, by all means do so. Of course, sometimes insurance, finances, time and distance play a role in this. Still, if you can remedy this problem in any way (like seeing a different doctor or therapist in the same practice, for example), it's worth it. YOU are the reason THEY have jobs in the first place, and when they lose sight of that, it's time to move on.

4. You are not alone. You may have never met a single soul who shares your vertigo nightmare. Believe me, though, we exist. Before I got dizzy, I knew exactly one other person who experienced the same thing. For whatever reason (luck was on her side!), she received a diagnosis and good treatment with her FIRST attack. Unlike myself, who took 12 years to get a proper diagnosis and meaningful treatment. At first, NOBODY else had ever heard of dizziness/balance/vertigo issues. I found a few people online, then a few more, then a few more. As I racked up years of dizziness under my belt, though, I have met more and more people outside of the Internet who have had these problems. Or knew someone else who did. I have discovered that more people have heard of Meniere's than BPPV, so I say I have Meniere's. To be completely honest, I don't know which of the two I actually have. Or if it is something in and of itself. Still, it's Meniere's to most people. At least they get it that I have a dizziness problem.

I hope I have helped at least one person understand this condition more. I can't give professional medical advice, but I can pass on what I have learned. If anyone wants any more information, or just support, I would love to hear from you. Be well and hang on. Literally, hang on to whatever you have to. I do it every day.

why are we settling?

so I had an appointment today with the nurse practitioner.

this is with the practice that diagnosed my balance disorder and now treats my migraines and fibromyalgia.

they also track the balance disorder, but basically feel that since I've been through balance therapy and, since I've had it for so long, there's nothing more to be done.

however, I think that is a load of crap.

and I'll tell you why.

they've only recently diagnosed this disorder (well recently in the scheme of things considering how long I've had it) and I've had a whole lot of improvement since they have AND ALSO

since then they also discovered that I have herniated discs in my neck.

now, the nurse practitioner gave me this little gem today.

she said that "most people have herniated discs and have no problems with them."

may I take the time here to call bullshit?

seriously now.

they discovered these herniated discs in my neck, not on accident, but because I was HAVING PROBLEMS WITH MY NECK SO THEY DID AN MRI!

she said that, unless the herniated discs press on nerves, do they cause headaches or tingling in the hands.

DOES SHE EVEN LISTEN TO THE THINGS I HAVE BROUGHT UP IN MY VISITS?

I have been going there for at least a YEAR for migraines and telling her that the migraine medicine does not work.

and, I have gone for an EMG IN THAT OFFICE for TINGLING and NUMBNESS of my hands, which has gotten progressively worse.

can somebody please tell me how what I said is DIFFERENT from what she said?

ok, so she decides that I can see pain management for the treatment of my migraines (I guess that's what I'm going for pain management for...I am still planning to bring up the whole hand tingling thing to them anyway), and that will involve shots in my neck or shoulders, so that is listening to me, I guess.

then she does my neuro part of my exam and that makes me dizzy.

it's the looking down that does it.  doesn't that say something?  it's still my neck.  why can't someone put two and two together????

it happens on a delay, too, not immediately, but within, I guess 4-6 seconds. and lasts quite a while.

it comes in waves, too.  awful.  thinking about it makes me want to get dizzy again, but I'm fighting it.

I don't understand why I can't discuss these issues with a neurologist, you know?  why do I have to keep having a nurse practitioner GUESS at these things?  it's really pissing me off!!

every time I TRY to make an appointment with the neurologist, the staff tells me that I am just MAINTENANCE and that I only need to see the NP, but I don't feel that this is accurate.

I don't know about other patients, but I have had this vestibular thing for almost 13 years.  that's a HELL of a long time to be dizzy.  we are talking almost ONE THIRD OF MY LIFE.  I am sick and tired of being dizzy, to be perfectly honest.  and I imagine, so is everyone around me.  it's draining physically, mentally, emotionally and financially.

so, WHY IS IT that MY issues are less important than any other patients?  I am not what I would call better.  I am not satisfied with the extremely casual attitude the NP had today when she said to me, "some people have vertigo for a very long time."

it has not even been considered that my vertigo is coming from the problems in my neck.  I have been to physical therapy for neck MANY YEARS AGO.  WHY IS NO ONE CONSIDERING THIS??  HOW DO I GET SOMEONE TO LISTEN?

I guess I'll try the pain management doctor, but who knows?  this is almost, but not quite as frustrating as when I had no diagnosis at all.

and, from what I see from others like me, it happens all the time. our issues are, somehow, less important.

go on any vertigo message board and you'll see dozens of frustrated people just like me. or worse. it sucks.

long time...update

it's been a long time since I've updated this blog.

things were kind of the same for a while, so I guess I didn't have anything to say.  I was going around most days not really dizzy, pretty much avoiding things that would make me dizzy.

day in, day out, I felt like a prisoner of my inner ear.  I still do.

it got to a point where I said enough is enough.

I hadn't been driving for, what 3, 4 years?  it was time.  so I just started.

first it was out of necessity.  a little here and a little there.  my daughter needed a ride to school or a ride back from drama.

then, it suddenly became part of our routine.  ha.

I also got a job. a tiny little part-time job, but a job nonetheless.

I did discover that I can't see at night to drive.  at least not now.  I made an appointment to get my eyes checked out, but I suspect that might be a permanent problem.  I never was a good night driver.

the eye doctor I am going to see also is a neurologist, so hopefully he will understand my balance issues and my convergence issues.  it's always an adventure when I go to a new eye doctor, so I don't know.

on top of this, I've been getting more and more arthritis, and the other day, I suddenly couldn't walk on my ankle.  it got so bad, my partner insisted I go to the ER (I was just going to go to an orthopedist, but she insisted). they didn't see a break, so I'm thinking it's probably part of this arthritis ridiculousness.

at the ER, they prescribed Vicodin and a high dose of Ibuprofen for my ankle.  I've been taking it for a couple of days.  I've been careful to be conservative in how much I take since I already take other meds on a regular basis.  however, I have been getting dizzier than usual, and I can only assume that it is side effects from the medication.  also, I learned that trying to walk on the crutches the hospital gave me was a complete no-go and made me off-balance and spacey as well.

I'm going to an orthopedist the same day as the eye doctor, so we'll see what he has to say.  I feel like I'm falling apart.  just when I'm making a few steps in the right direction, poof, things go to crap. oh well, gotta keep on keeping on.

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.

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.

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.

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.

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?

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?

My New "B" and Other Therapeutic Torture

The other day, I was stepped up to a different "B" in therapy.  For those of you who have no idea what I'm talking about, I'll explain (and, hopefully, provide a visual aide if I can figure out this blogging thing right).

You see, when I started balance therapy, among many of the exercises I have to do, one of them is the "dreaded B."  Basically, you're given a point to look at (in this case a letter "B"), and made to do things that normally evoke a dizzy response while focusing on this damned letter.  For example, moving your head from side to side, or up and down.  The basic "B" looks like this:

I had worked on the simple "B" for a while until I, apparently, mastered it, (got less dizzy while working with it), and then I graduated to this "B":

This "B" was supposed to be torturous, apparently.  When different therapists would see what "B" I was working on, they'd say stuff to me like, "Oh, God, poor you."  Or, "That one makes me dizzy."  But, for some reason, it didn't evoke any more of a response from me than a regular "B."  My guess is because of my crossed eye and my inability to see things 3-D like the rest of you people.  Since it's black-and-white, maybe it's not such a challenge for me?  I don't know...

Anyway, so I had my setback, and I went back to the simple "B" for a little while.  I also was working on some "B's on sticks."  Yep, that is just what is sounds like.  

I had to do some eye exercises and tracking with these lovely letters.  The purpose of these exercises were to try to strengthen my eyes, try to get them to work together, try to increase my peripheral vision and also to desensitize my responses to movement.  I am sure I will be doing lots more of this in visual therapy (I go for an evaluation February 6).

So, I saw my regular therapist on Monday and she re-assessed my progress.  She decided I could "graduate" again to this wonderful "B":

Yes, it's a checkerboard.  This one is supposed to be between a regular "B" and the crazy black-and-white one.  But for me this thing's a killer.  I can barely get through my exercises with it.  Hell, I can barely look at it right now on this screen!  It's that disturbing!

So, I do these lovely eye things in addition to any other physical torture they decide I need to endure that day.  It may be the treadmill or the stationary bike (physical exercise is important to everyone, but for us dizzy's, who tend to shy away from it, it is even more so...the benefits are enormous), standing on a wobbly board, walking around cones, balancing myself on a rocking board, standing on a cushion (simulating uneven surface), walking around while turning my head, throwing a ball, and on and on.  

More days than not, I leave there telling my partner, "they beat me up in there."  But I know it's for a reason.  

I laugh and call it  "therapeutic torture".  I'm trying to stay positive because it's the only way to stay out of the pity pot.  And because I feel I owe it to these therapists, to my partner, and especially to my kids and, yeah, to myself, to keep at this and try to get better.