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. 

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.

this and that

I haven't written in a while.  Things have been pretty much hectic yet boring at the same time.

The hectic part came with getting my daughter ready for Prom and Graduation.  It came and went.

The boring part is, well, every other day.  But I'm working on it.

Now that the warm weather is here, I've had a little more energy, so I've been inspired to do a little more to better my situation.

For one, I've decided to become a support parent with Parent to Parent of New York State, an organization that exists basically to put parents of special needs individuals in touch with one another for support and so we can help each other find services, learn to advocate for our kids, things of that nature.  I have wanted to do something like this for a long time.  I just didn't know how.

For another, I re-did my resume and I now have an interview next week.  Shhh!  I haven't told many people yet!  It's actually not in my normal field, but I've done this type of work before.  It's been too long and I need to be productive and with people and out of the house.

I take little jabs at creativity, too.  Eh.  Not so good so far.

What I really need to do is exercise.  I feel myself getting out of shape.  Badly!  I told Stacy I want a treadmill since I know I won't go on walks.  I've gone on exactly 2 this summer.  I think I just need to find a good deal on a treadmill on craigslist, set it up, and be done with it.

What I also need to do is write more. And read more. Or my brain will rot.  I have been playing games to try to stimulate it, but that's not the same thing.  I am amazed at how short my attention span has gotten being home alone all day.  

I'm still on the fence about driving.  I think I have psyched myself up a little that I can't now, between the physical therapists saying I shouldn't, Stacy being afraid of me driving and me living in an unfamiliar place.  I've got to just swallow that fear and do it.  Or decide if I really shouldn't.  

So, this is all that goes on with me.  A lot of neurosis.  A lot of nothing.  I didn't even mention the constant barraging from "certain people."  Yeah, the same "certain person."  She is who she is.  Hmmm, wonder where the neurosis comes from?

Oh, I went to physical therapy for my neck.  Can I just say holy cow, when a person with fibromyalgia gets a massage it hurts like hell!  I may not be able to continue to go for PT because I may have used up all of my therapy for balance.  They are supposed to look into that and let me know.  

quiet rebellion

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

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

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

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

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

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

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

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

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

good to know

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

MRI results

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

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

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

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

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

oh, but let's wait til June.

sure, it's not HIM.

sometimes doctors suck.

perhaps I would like to go on with my life.

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

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

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

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

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

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

more wasted time, more wasted visits.

I'm just a little frustrated now.

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

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

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

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

pain in the neck and stress

I saw my PT on Monday.

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

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

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

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

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

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

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

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

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

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

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

however

sometimes

it's

not

anxiety

and that aggravates the crap out of me.

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

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

I probably will cry before this entry is finished.

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

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

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

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

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

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

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

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

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

so now you know where I'm coming from.

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

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

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

I wonder if there is a bottom.

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...

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...

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.

dealing

So I cried yesterday.

It was the first time since I relapsed that I cried.

I decided to unload the dishwasher, this, after I watched my partner run around the house cleaning and doing laundry and preparing food and making the house look semi-decent.

You know, the things I normally do on a daily basis.

It's funny how much we've both come to take those things for granted.  Well, she doesn't take them for granted, she says.  She's very grateful for what I do.  She jokes and says she can't wait for me to get better this time because she can't believe just how much I actually do as a "stay-at-home mom" and a "sick" one at that!

But I felt very guilty just sitting there while she worked around me.  I had to do something.


I figured how bad could the dishwasher be.

For an educated person, I can be pretty stupid sometimes.

Just the act of unloading a dishwasher involves looking down and reaching up at several different levels over and over again.  Stopping.  Sorting.  Looking at different vantage points.  Bringing your head down.  Turning it one way.  Turning it another.  If I were designing a vestibular therapy exercise, in fact, I would set up a mock kitchen and have my patients load and unload a dishwasher.  It's quite a functional exercise.

But I was not in therapy, I was home.  And halfway through unloading, I felt the floor come up to meet me.  I held onto the counter for dear life.  That's when the tears came.

Of course my partner scolded me for getting off the couch.  I told her I wanted to help and cried some more.  Then she scolded me for crying (there are no "pity parties" in my house).  She also reminded me it wasn't good for my little one to see me upset (she's right, of course).

Still, I was almost relieved I cried.  I was beginning to think I was incapable of crying.  Now that it was done and out, I felt like I could deal with this relapse.  I think.

And then I went to balance therapy.  I saw the same guy I saw last time.  He did some eye exercises with me, then went on to a few more challenging things.  He was concerned, and, I don't know, puzzled?  I feel way less puzzled than he about this relapse.  To me, this is standard; I will relapse.  Should I not be while in therapy?

While there, I saw one of my regular therapists, who learned of my relapse.  He was surprised and disappointed.  He also got to see me fall.  Twice.  After the second time, my therapist called it quits for the night.

I tried to keep up a cheerful front during therapy...I don't know, so they don't think I'm panicking or something.  Deep down, where nobody sees, my panic is real.  Not about this particular relapse, but about my condition overall.  About its permanence.  About how much it has stolen from me and how much it will continue to steal from me.

I wonder if anyone will help me for good, or if this is as good as it gets?

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...