What’s been happening

It’s been a couple weeks.

My dizziness has generally gotten better. I will have problems if I move my head too quickly, but, overall, the dizziness is much better. I think vestibular therapy and time have helped.

I still have shakiness and weakness in my legs. No idea why. I’m also really easily fatigued.

I also went to the ER last week with an attack of colitis. My gastroenterologist said not to worry about it because he had just given me a colonoscopy that showed no disease. However, this has made the fourth time in three years or so that this has happened to me. I don’t know if it’s related to anything, but, since it’s happening now, I thought I’d record it.

I just saw a neurologist yesterday who actually took a long and detailed history of my symptoms and gave me a thorough exam. She is ordering some MRI’s. She did not think this was related to stress (neither did my psychiatrist, btw).

Oh, and the itching finally went away.

I made an appointment with a rheumatologist just in case no one else can figure this out. I do not plan on being sick forever. Or, if I am, I at least want to know what I have.

Vestibular Therapy Today

Had my bi-weekly torture session otherwise known as vestibular therapy.

I guess “torture” is a strong word. But it is very difficult and makes me super dizzy and leaves me exhausted.

They stepped things up, too, having me do exercises on a balance board. It’s just what it sounds like. A wobbly board you are supposed to balance on.

They also did other head positioning moves which create endless dizziness and nystagmus.

I talked to both therapists who have worked with me about my neurologist visit. They were both surprised and angry. They acknowledged these symptoms were not consistent with something psychosomatic.

For example, I had to use the exercise bike. As I was pedaling, my right foot kind of arched and pointed. I could not get it to stop and pedal normally.

I’m trying to not obsess about all this but it’s hard when you don’t have answers.

Thank you, next

Neurologist today.

Did not go well. We went over my symptoms and he feels they are not neurological.

He went on to suggest they are from stress.

Sigh.

I’ve been down this road before. Neurologists telling that my condition does not present as “typical.”

That doesn’t make it psychological.

He said people also don’t suffer from chronic vertigo. Which is false. Being a member of several vestibular/balance/dizziness communities, I can confirm that thousands of people suffer from chronic vertigo.

So, he already had my distrust.

But, EVEN IF the walking issues were somehow due to some kind of psychological compensation, which does happen after someone gets vertigo (which I also told him and he DENIED!!!! This is, indeed, a fact, proven to me when I have had severe vertigo in the past and explained to me by doctors and vestibular therapists)  I did not psychogenically develop cellulitis and swollen lymph nodes.

He referred me to a movement specialist. A partner of his. I don’t know how I feel about going. I don’t think this is a movement disorder. And, if it isn’t a neurological one, then I’m back to it’s because of these infections I keep getting.

K

Weird symptom

Yesterday, I woke up and my head felt like it was being stung by a million fire ants.

Itching like mad. Like it was infested with bugs (it’s not. I checked).

It was absolute torture. And I also had lumps all under the skin on my scalp.

The internet was no help. I didn’t call the doctor because what am I going to say? My head itches?

I tried showering. I use a gentle shampoo bar from Lush which I have been using for months so I figured that would be safe.

I tried changing my sheets. Just in case. I do have pets. My daughter has been sleeping in my bed while hers is broken, though, and she has no itching problem, so it’s most likely not environmental. Still, I have to cover all of the regular bases.

Itching continued all day. All night. My brother-in-law told me to try Benedryl. I hadn’t up until this point because I figured I couldn’t be allergic to anything...there was nothing TO be allergic to. He said it still could help the itching because of something something histamines.

I took Benedryl. Some relief. Some more Benedryl. Went to bed. This morning, the lumps are smaller and there is still itching but maybe not as violent. However, parts of my ears are getting itchy and swollen again. What the actual hell?

As far as the dizziness goes, that waxes and wanes. At times, I can almost walk a straight line. At other times, every step is a chore.

Hey, maybe when this is all resolved, I’ll get a disease named after me? This is really some crazy stuff.

It’s all apparently uphill from here

Vestibular therapy again today. My normal therapist was out so I worked with someone else.

She watched my balance issues and my body’s responses to exercises and basically said what my other therapist said: that this is not normal vertigo stuff and hopefully the neurologist could figure out what is happening.

She asked me if I have a family history of MS or Parkinson’s (I do not). She feels I should be thoroughly checked for either of these.

I still have an entire week until I see the neurologist and this is frustrating to say the least.

Oh yeah, my walking is actually getting worse, too.

I’m honestly not even afraid of what it can be. I’m more afraid of no one finding out what it is.

Vertigo is a liar

Being dizzy warrants a great deal of laying-down time.

Pretty much all day, every day.

With something supporting your neck and head.

And then, for the most part, you feel “normal.”

Even guilty. Like hey, I’m not really sick. I’m feeling just fine now.

So you get up. And you remember.

Sometimes, vertigo lies long enough for you to actually do a life task. Like do the dishes or cook a meal. Or, God forbid, take a shower.

But it always reminds you. It’s still around. And it will rock your world and pull you to the floor and make you wish you never got out of bed.

You’d think this being my fourth? fifth? time at the rodeo that I would be wise to vertigo’s tricks, but I actually think it’s worse because I’m just impatient for it to get better. Those other times I was hopeless and was sure it would last forever and now I just want to get on with my life. I miss my job and my friends and driving and not friggin being dizzy!

Vertigo, you have made your point. You’re chronic. I get it. Go away now. I’m getting bored being home.

And the world still rocks

I had vestibular therapy today. I’d like to say it was an enjoyable experience but that would be a lie. It was, well, it was torture if I’m going to be honest, and I have made it a point to be honest on this blog.

I had to do all kinds of standing on one leg things. I felt simultaneously like the floor was rushing up at me and that I was rocking on a boat in a storm. Over and over again. As you can imagine, it was not easy and I was relieved when it was finally over.

Until she did that making me lay down really fast while turning my head thing. My eyes fluttered for about two minutes (she told me) when we went to the right and about a minute when we went to the left. After that, I was pretty much done FOR THE REST OF THE DAY!

I’ve been home for hours and my vestibular system is still super irritated. I can barely move my head without waves of horrendous dizziness rushing over me. Walking is horrible. Still, I know I’ve had it much worse and that’s what drives me to know it will get better. I’m just getting a little impatient.

What comes around..

It’s back.

After 6? 7 years, my good buddy dizziness has decided to come for a visit.

I guess I can’t complain. I’ve had a good run.

I’ve been driving (except at night, but that’s because I have poor night vision).

I’ve been working. Full time. More than full time because I took additional jobs on top of my full time job.

I wasn’t completely clear-headed in all of that time, but I had learned to function just fine. No sudden head movements. No roller coasters and the like (I tested that once and regretted it for days).

Then, I had some random itching on the outside of my ears. They got hot and swollen. After a few days of that, the dizziness hit and it’s been hanging around ever since. I was in the hospital a few days with it. The neurologist I saw there said the swelling probably went into my inner ear and messed things up. He said such swelling could be on the microscopic level and be enough to throw off my balance. Awesome.

I’ve been off from work a week and it’s boring. I’m set to start vestibular therapy tomorrow.

One big difference between this time and the others: I’m not afraid and I’m not searching for answers. I know what it is and I know it can go away. It has before. It’s also been so much worse. So, I have nothing to be afraid of. It’s just not a super-fun way to spend time off.

Will update after vestibular therapy.

Seeing 2-D In a 3-D World

I have a convergence disorder. When I focus on anything, either of my eyes will cross. For most people, when they focus, their eyes, naturally, look straight ahead together. The resulting image for me, apparently, is somewhat more flat than for typically sighted people.

Even though my brain has long-since learned to compensate for this, it still manages to impact on my functioning daily.

Take driving, for instance. Since I have a very hard time judging the distance between myself and other cars, I usually drive much further from the person in front of me than I probably have to. That may annoy some people, but at least it's safe. Parking, though, is another story. A spot has to be huge in order for me to try it. "Fortunately" for me, I have a handicapped parking placard, so I can usually find larger spots when I'm out.  Usually, but not always. Just today, in fact, I left a parking garage because the spots all seemed micro-sized to me. It was embarrassing, really, to have the parking attendant watch me attempt not one, but two spots before driving away in defeat. "Drive home safe," he told me. I drive fine. I just can't park! Oh, and never, ever ask me to parallel park. I have no idea how I did it for my driving test. Thank God I never have to do it again.

It's not just driving, though. I even have trouble simply walking. I never see little dips in the ground or bumps on the sidewalk. Especially if the color doesn't change. If I had a dollar for every weird step I made into a hole, over a seam in the cement or down a dip at the edge of the sidewalk, I'd have a tidy sum by now. Good thing I have strong bones. 

Walking in the dark is an even bigger adventure. The shadows and bits of light trick my eyes into thinking that bumps exist which don't and ones that do exist are even harder to spot. I usually hold on to things, walls, people, to avoid falling on my face. 

There have been less important ways I've had my lack of singular binocular vision affect me over the years. I can't catch, throw or hit a ball. Threading a needle can be torture. I also can't see a 3-D movie. Shrug. 

I have tried vision therapy at various times. It's really uncomfortable and there's a very slim chance that it will work for someone my age. I had that one doctor fairly recently suggest surgery to correct my eyes, saying it may even help my chronic dizziness. However, he also said it could make things worse as my brain has been used to seeing this way for so long, not to mention the fact that my eyes could just go back the way they were. Nah. I'll just hold on to things and park in big spaces. It's worked out all right so far. And I honestly don't mind missing out on 3-D movies. Or playing ball.

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. 

Convergence Insufficiency

I was born with a crossed/lazy eye.

My parents tried to get this corrected. They took me to several specialists, a few of whom suggested surgery. My parents were against eye surgery because, well, it's eye surgery.

They went with more non-invasive correction, such as patching the good eye or putting drops in it to blur the vision in order to get the weaker eye to work harder. But surgery was out of the question.

As far as anyone really knew, this was a cosmetic issue.

I'm sure my parents were told that I may see double some, but that my brain would figure out how to suppress the second image over time and see one image.

For the most part, that is true. And, considering how much was really known about eye surgery when I was a kid, I fully support their decision to have done what they did.

My eyes did, indeed, learn to make one image most of the time. At times, I do see double, but usually there is just one image of what I am looking at.

It is not always spatially "correct," but it is still one image.

So, what I didn't know was that, all this time, I was fighting convergence insufficiency.

I started to learn a bit about this in visual therapy. Basically, yeah, my eyes HAVE learned to see one image most of the time.

But it takes work, man.

Sometimes CONSCIOUS, DELIBERATE work.

Like, if I am having a conversation, my eyes will dart all over the place trying to fight for dominance.

Or when I am reading! Ugh! I love reading, but I hate it, too.

It's PHYSICALLY EXHAUSTING and UNCOMFORTABLE!

I really never say anything about it because I didn't know this was even a thing.

I just thought I was a distractable person.

More fuel for the dizziness fire, I suppose.

dizziness and fibromyalgia...who knew?

It has been awhile since I've blogged, not because I am suddenly "well," but because things have been pretty much the same.

Sort of.

The dizziness waxes and wanes. I guess that's just the way it is going to be.

On the other hand, my fibromyalgia has been horribly horrendous lately.

I had a 3-week migraine-a-thon around Christmas where, literally, every single day I had a headache - and most of those days it was at migraine level.

That pain seeped into my neck, then into my shoulder, where it has been living quite uncomfortably.

I went to a few days of physical therapy. After some major snow storms, that kind of fell by the wayside.

I'm chalking all that up to "typical" fibromyalgia.

I've also developed a new agony - gum and jaw pain.

This, too, appears to be a fibromyalgia-related ailment. Not as common as migraines and muscle pain, but fibro patients do complain of this type of pain, so.

As I learn more about fibromyalgia, I have become aware of another common symptom:

Dizziness.

Isn't that interesting?

I was diagnosed with fibromyalgia about 2 or 3 years after the vertigo first invaded my life. However, I remember having fibro symptoms several years before that. In fact, I have found old journal entries where I wrote about debilitating fatigue and body aches which were taking place way, way before the first vertigo attack.

So, which came first?

It is true that many who have chronic dizziness develop fibro or fibro-like symptoms from the body's constant fight to keep balanced and make sense of the mixed messages that it gets from the brain versus the world (very detailed explanation here).

However, I remember being sick before the dizziness. IF this dizziness is from the fibro, that is.

I hate that it is such a mystery.

Perhaps it IS all in my head...

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

excuse me while I complain

I haven't written in a while (obviously).

I haven't had much to say.  I've been home, doing not much of anything and I hate it.  the dizziness still comes and goes.  for no good reason.  I've quit trying to understand it.

I haven't been doing much about it, either, though.  that's probably a bad thing.  but I'm just frustrated and, aside from Stacy, absolutely NOBODY could give a wild you-know-what (controlling myself) about how I'm doing or how my life is going or just anything at all. so I don't care anymore.

yeah, it's one of THOSE days.  why?  I'll tell you why.  because people say stupid things to me and expect me to suddenly NOT be dizzy and back to the way things used to be or

they just don't talk to me at all

nice

it's not that I'm complaining about being dizzy.

it's that they say stuff like, "why aren't you driving?" or "any job yet?"

I'm pretty much talking about my mother, I guess.

because nobody else calls at all.

I went to a rheumatologist to see if I can get better treatment for my fibromyalgia.  she said she "wanted to get to know me better."  that is doctor code for, "let me make sure you are not a drug addict before I give you different medications."  which, in my case is ridiculous, because if she just took a look at what I was taking right now, she could see I was not taking ONE addictive medication.  hell, she could give me a drug test, or get my records from other doctors.  instead, she is wasting my time.  so, I continue to be in pain, have sleeping problems, thinking problems and, well, I'll wait.  she did tell me to add fish oil to what I take everyday, so I did.  no change.

 anyway, that's about it on the health front.

whose time is it anyway?

and so, Monday was my physical.

I wasn't quite fond of the idea of going.  less so, was I fond of the doctor who was performing said physical.

however, it was suggested by the nurse practitioner at the neurologist's office, that I have a physical done to have different things checked out (I felt like a faulty vehicle), and so I went.

this was my agenda: discuss my horrible joint pain which I think is not just fibromyalgia, discuss my inability to lose weight despite my hardly eating anything, discuss the strange dizziness that isn't my normal vertigo (that the physical therapist said see a cardiologist about (I still don't know about that...), and bring up a, er...personal problem (it's gross, you don't care about that).

this was her agenda: do I get a womanly check-up every year? (I'm a little behind, ok). mammogram? (same, but, for my age, it's not crucial, so back off), and stop smoking (of course she needs to say that).

she was casual, but really casual.  relaxed is ok, but there is a point where, for me, it gets uncomfortable when health care professionals are so laid-back, they fail to be working (almost) and they are barely going through the motions.  like she was saying to me by her actions, "I really don't want to be here, but..." (hey, who does? it is her job, though, make an effort, huh?).

my girlfriend has this saying, she picked up along the way about not taking other people's inventory.  basically, it's along the lines of don't judge people.  I used to be that way.  but I'm becoming more judgmental as I come into contact with more people.  I also find it amusing that she uses that line, because she is one of the most judgmental people I know, but that's ok.  I love her just the way she is.  anyway.

the physical was over and done with in the blink of an eye.  I felt like I was bothering her every time I asked her a question.  I managed to squeeze a few of my concerns in, but not the major one, the dizziness.  she made me feel so disgusted and, well, stupid.  (this seems to be a common theme for me, people making me feel stupid).  it was all I could do to keep in the tears.  I actually couldn't.  as soon as she left the room, they came and I cried as I undressed for my EKG.  Later, I cried even more in the bathroom.  I resolved never to go back to her again.

so, added to the list of doctors who made me feel that their time, somehow is more "valuable" than my time.

to quote Dennis Miller, "I don't want to go on a rant here, but..."

having the letters MD (or DO, as it were, in her case) at the end of your name, does not make seconds, minutes or hours have any more value than anyone else.  you may make more money than other people, but, at the end of the day, we all have the same 24 hours in a day, the same mundane tasks to perform during them (everybody eats, sleeps and goes to the bathroom), and, eventually, every single one of us will die.

yeah, that's where she took me.

this whole journey, this being a patient thing, this going from a "healthy person" to a "less-than-healthy" one and seeing doctor after doctor, healthcare person after healthcare person has made me so damned sensitive to, well, everything, every part of the process of getting a person healthy; the language that's used, the atmosphere in which one is treated, the timeliness of getting results, the amount of support available.

it seems to be lost on me.

first of all, my condition isn't life or death.  it's life-affecting, but I'll live.

second of all, NOBODY CARES, or seems to.  maybe because of the first thing I said.  and also probably because the percent of people it affects like me are small.

third of all, what I am going to do with this information?  even though I realize that this stuff applies to people not only with balance disorders or fibromyalgia, or whatever else I may or may not have (or the people I've worked with...they've been treated quite poorly as well), and this is a far-reaching problem, I am not sure how to get my voice heard.  I feel like I'm one person, one small voice yelling in a throng of so many apathetic drones who just go on with their day-to-day existences UNTIL

it matters to THEM.  or THEIR families or people THEY know or love.

I suppose that's one reason I write this blog.  and hope it matters to somebody.

I WILL write my book, too.  because that will mean so much more.

disturbing development

so, I'm supposed to be exercising.

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

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

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

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

made sense to me.

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

then, it hit me.

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

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

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

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

why did these motions bring on this particular reaction?

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

I had to know.  so I did it again.


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

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

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

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

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

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

this now leads me in another direction.

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

but what the hell is THIS??

MRI results

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

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

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

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

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

oh, but let's wait til June.

sure, it's not HIM.

sometimes doctors suck.

perhaps I would like to go on with my life.

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

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

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

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

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

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

more wasted time, more wasted visits.

I'm just a little frustrated now.

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

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

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

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

trying to 'break free"

I've been feeling restless lately.

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

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

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

some days I feel more ready than others.

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

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

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

bring on the job, then, right?

I don't know.

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

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

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

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

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

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

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

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?