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. 

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.

If I wanted your opinion...

The other day, I posted some rules and advice for dealing with a dizziness disorder. I admitted already that it is hard for me to follow my own advice. And so, I have no problem letting off some steam while I, once again, do not do what I tell others to do because I know it's right.

I am so sick and tired of trying to "defend" my illness to people who feel the need to try to diagnose me or my symptoms with NO knowledge whatsover about what they are talking about.

It should not bother me at this point, but it does. Terribly.

First of all, I feel like crap when I'm told by people that my symptoms must be psychological because they are happening at such-and-such a time. For example, my mother says the motion sickness and disorientation that I am experiencing in the car must be psychological because it is happening since I started driving more and working a little bit.

I try to explain to her that 1) These and other problems happen all of the time throughout the year and when I also have nothing going on. They happened all those years I wasn't driving or working at all. As they have been happening over the past 13 years. So for them to happen now isn't any different.

And 2) One of the things that triggers symptoms is stress. Any kind of stress, not just emotional. Physical stress, mental stress, dietary stress, overstimulation, overexertion, overtaxing, and just plain overdoing it. So, when I go from being inactive and working at my own pace at home, where everything is familiar and I have very few deadlines to working, driving around, adding myself as a means of transportation, trying to learn an unfamiliar area, deadlines, demands. This is piling on every stress at once. Seems obvious to me.

Of course, I know my mother also considers that I have a past history of emotional issues. Yes, yes I do. So many of them pertaining to this very same illness, particularly at the beginning of it, during all the years of misdiagnosis and mistreatment, and when I came to realize that I probably will have this the rest of my life. I also had other issues that I was dealing with along the way. Let's just say it's hard to maintain healthy relationships, friendships or habits when you become so incapacitated and, as a result, depressed, anxious and hopeless.

People, in general, are under the assumption that those who suffer any kind of mental difficulty are not worthy of being counted as whole people. That having, say, obsessive-compulsive disorder or panic attacks means that every physical symptom that person feels must manifest from a place in their head, not to be taken seriously.

And so, because I've been depressed, my complaints surely must be psychosomatic.

It really sucks to be treated in this manner. But it doesn't stop there.

Because I was depressed, not only are my symptoms in my head, my entire vestibular disorder is in my head. Despite the medical opinions of several specialists who are in agreement, after testing and treatments. That all doesn't count, because I was depressed. Over getting sick in the first place.

What makes people think it is alright to talk about my illness like they know better than myself or my doctor? And I don't buy the "because they are family" line. I'm not going to ask my mom how her gynecology exam went. I understand boundaries. Some things are personal. Some lines shouldn't be crossed.

It hurts to be told I should go to therapy to deal with the "problems" which cause my balance issues. If only I could heal my vestibular system with talking. I'd be on a couch tomorrow. Can a person "talk" their broken leg into getting back together? Or "analyze" their high cholesterol into resolving itself? This is different how?

Surely not because stress makes it worse. Stress also makes diabetes worse, high blood pressure worse, migraines worse, PMS worse, colds and flu worse. Do people who deal with those ailments get told they have to go to therapy? This is different how?

Because it's invisible? There actually are tests which can help to diagnose BPPV, Meniere's, and other vestibular conditions. How do I know? Because I TOOK them. I wasn't just RANDOMLY treated.

I also happen to keep myself informed. I read about vestibular issues and I speak to others who also suffer from them.

NO MATTER HOW many times I offer this as validation of my physical illness, I encounter flak.

It's frustrating as hell.

Not sure if I feel better now. Still, it had to be said.

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.

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)

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?

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...

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...

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?

vertigo happens

Yesterday's therapy was definitely interesting.  They called in the troops.  (Have I mentioned that I love this place?  I will, about a million times.)

At first they were puzzled at my relapse.  I was doing so well.  Yeah, I've heard that before.  But I knew not to panic this time.  These people taught me that.

These particular therapists were not my "regulars," so I explained how long I'd been at this, and what could possibly be at work here, my new medication, the weather, or just because.  Just because this is the third January in a row this has happened to me.  For no other apparent reason than it being January.  Only this time I've been doing everything to prevent it and it still decided to happen.  So, I guess my vestibular system really, really hates January for some unknown reason.  

The aide knew he couldn't do anything with me, so he called in the assistant who was supposed to be working with me (often at physical therapy establishments, therapists or assistants who work with patients will have aides go through exercises or therapies with patients who are doing well, especially when said therapists or assistants are finishing up with their last patient.  It's common practice.  I have seen this in every establishment I have been to -- sometimes they even employ the services of interns for this purpose).

The assistant came in and evaluated my situation.  He saw I was in a bad way, so he said he'd do a Hallipike maneuver to see if he observed any nystagmus.  He had me sit down with my legs in front of me then dropped me down quick with my head to the left.  As I felt the familiar dizziness come over me, he told me that he did, indeed, see my eyes pulse, or move, or whatever nystagmus looks like.  He had me collect myself and then repeated on the right.  I felt fine and said, "no, this side's ok." Just as the words came out of my lips, the world spun out of control and my eyes started fluttering.  Rolling around in my head like something out of a horror movie is more like it.  I heard his voice from a foggy distance, "what's happening?" and I knew I had to answer or he'd think I was seizuring.  "That's just my body's neurological response," I tried to explain.  I felt like hell.  He had me ride out the dizzy wave and then had me sit up.

He called in someone else, whom I assume was a therapist, and we then worked on eye exercises and head turns, all seated.  This was a far cry from what I had been doing this past few months, but vertigo happens.

My "homework" is simple, back-to-basic seated exercises.  And, yet, they still make me dizzy.  It is what it is.

I had one moment today of "what if?" (what if I never get better?  what if the exercises never work?  what if my condition never improves?  what if I can never go to work?).  My partner said we'll get by.  I love her for that.  I hate that I have to ask.  But, apparently, vertigo is going to keep on happening and happening and happening and...

holding on

I woke up today and, right off the bat, I realized that getting to the bathroom was not going to be as easy as it usually was.

When I stepped onto the floor, I felt everything tilt and I stumbled until I hit the wall.

It was as if I had been at sea for months and I hadn't gotten my sea legs and recovering from a hangover without the fun of the drink the night before.

here I go again...


I knew this day was coming.  I just didn't know when.  And now I kinda felt like Chicken Little with pieces of sky in my face.  This is not an "I told you so" you want to have right.

But with a vestibular disorder, you're always Chicken Little and the sky is always falling.  No one wants to think so, but you can go from perfect to horrible in the blink of an eye.

Let me start from the beginning.  I'll try not to be too boring.

11 years ago this past Christmas Eve, I joined the ranks of the dizzy.  It was much worse than it is now.  Much, much worse.  At first, I thought I was having seizures, but I was awake.  My eyes rolled up in my head and my body would shudder violently.  (My moronic fiancee...now my ex-husband...didn't get me immediate medical care because he feared the hospital testing me for drugs!  We smoked a little pot.  For Christ's sake, I would have taken HIM if we had just shot up heroin and done twenty lines of coke, but, like I said, he's a moron).

When the attacks continued, we finally did go to an emergency room, where they told us to follow up with a neurologist.  On our way there, I fell in the parking lot, which happened to be adjacent to another hospital.  The neurologist's office said to bring me to the hospital instead, where they told me it was "stress" and sent me home with Xanax and Zoloft.  THAT made things 1000 times worse.  Within a day, we were calling an ambulance from my house, but since the EMT's didn't know what to make of me, they were asking me in the ambulance if I were being beaten.

I took many tests and spoke to many people at the hospital.  Finally, an Ear, Nose and Throat doctor told me he knew what was wrong with me...Labrynthitis, a severe infection of the inner ear that causes vertigo like mine.  He said the vertigo could take a few weeks to go away and he prescribed steroids and further testing at his office.

That should be the end of the story.  But it isn't.

His testing revealed "central nervous system damage" (whatever that meant).  He told me to follow up with a neurologist.

And so my nightmare with doctors began.

I saw doctor after doctor, had test after test.  No one could put a finger on what was wrong with me.  Some told me it was "in my head."  Some misdiagnosed me.

I lost the support of most of my family and friends because of my depression and the actions it led me to do. And because they didn't really think I was "sick."

I had to keep researching myself, finding answers, support, weeding out bad doctors, unhealthy relationships.  It has not been easy.

Two years ago, I decided to go back to the beginning.  An ENT and have him retest me.  Same results.  My inner ear is messed up.  From there, I tried some physical therapy.  That therapist sent me to a neurologist, who sent me for some testing.  That testing is what led me to my current treatment with a practice who finally understands how all this works...the vestibular system.  Every question I ask, they can answer.  They understand WHY my body does what it does.  HOW my lazy eye affects my improvement.  HOW neurology plays a part in the vestibular system.  EVERYTHING.  Even how psychology plays a role.  Amazing.

So, back to today.  I knew it would come.  How many times have I had relapses?  Too many.  I haven't had    one since I've started balance therapy at this place, though, but I'm glad I have them.  And I'm glad I have an appointment tomorrow.  I know they will help me through this one.