If I wanted your opinion...

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It's frustrating as hell.

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

dizzy rules

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

why are we settling?

so I had an appointment today with the nurse practitioner.

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

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

however, I think that is a load of crap.

and I'll tell you why.

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

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

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

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

may I take the time here to call bullshit?

seriously now.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

long time...update

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

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

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

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

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

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

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

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

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

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

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

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

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

then again maybe not...

so, I took a part-time job.

it was a seasonal job at Target.  I figured it was a good way to get my feet wet in the workforce.  and, if it didn't work out, 1) it was seasonal, so it didn't matter anyway and 2) it wasn't in my field, so it still didn't matter anyway.  but if it did work out, they were hiring a few people to stay on, so I would have a little job, and we needed the money and I am going crazy being in the house.

but, if you noticed in my second sentence, I used the word, "was."

I had had the choice of cashier or sales floor when I got hired and, considering my vertigo, I figured sales floor was a better choice because I figured standing in one spot for hours and hours would not work out and at least with the sales floor position, I'd get to walk around the whole time.

well, was I sadly mistaken.

I may have been right about the standing in one spot being a bad thing, however, I had no idea what the sales job actually entailed.  I found out.  and I didn't last past 2 days.  3 if you count orientation.

I had to constantly walk and put things on the shelves all day long.  walk.  bend.  stretch.  lift.  walk.  stand.  walk.  bend.  walk.  you get the idea.  about 2 1/2 hours into the shift, my feet hurt so badly, I wanted to scream.  By hour 4, my head was swimming.  By the end of the shift, I am not quite sure how I managed to get myself out of the store, but every nerve in my body was on fire.  fibromyalgia, vertigo, and just generally being out of shape...bad combination!  Especially for a job like that.  I thought if I tried again, I might work myself up to being able to complete the shift without pain.  It was just as bad though, if not worse.

although I felt guilty about it, I had to let the job go.  I still feel like I've been hit by a truck, but I'll recover.

I spent all day today looking for some other kind of work.  something less physical.

oh, and I drove the other day, too.

baby steps.  I'll get back to being me, I think.

normal? for me, anyway

so, yeah, I've neglected this blog.

I haven't had much to say.  still get dizzy.  but I'm not in a "dizzy crisis" as those of us in the dizzy world call it.

I'm at a somewhat "normal" stage of dizzy.  it's kind of weird when you think about it.

every day, I have to consider the levels of lights in a room.

every day, I have to be careful about how I turn my head.

every day, I have to be mindful about bending down too quickly, or getting up too quickly.

every day, I have to remember to eat, even though my medications leave me with no appetite.

it's not like these things are earth-shattering or life-threatening.  they are just inconvenient.

the fatigue is draining, though, and wearing  and the constant isolation is depressing.

I want better for myself.  I just don't know how to get there yet.

if disabled does not equal unsuccessful, (and it shouldn't) why do I feel that way?

yesterday I heard from the department of education.  they made a preliminary decision that I meet the requirements of a "disabled person," so they are planning to discharge my student loan.

I can't tell you what a relief this is.  as of yesterday, with interest, my loan was up to $44,000 and change.

my parents' and Stacy's parents' houses combined cost about that back in the day.

I know what some of you may be thinking.  I went to school, I got the benefit of learning all that stuff, why should the government eat that loan?

well, I have two things to say to that.

first, if I were to have gone to school a few years later, the government would have forgiven that loan with this new Obama Student Loan Forgiveness Act anyway;

and second, I went to school with the INTENTION of USING my education to teach people with special needs.  and not FOUR MONTHS into my FIRST TEACHING JOB, I contracted a PERMANENT DISABLING CONDITION which I have now dealt with for the last ELEVEN years.  this is no joke, no scam, and definitely NOT FUN.

I have tried MANY TIMES to get back on the work merry-go-round only to have my condition to worsen and then I've had to leave jobs.  that was never a good scene.  trying to get back on disability was a nightmare.  and always, always, ALWAYS I was made to feel like a LOSER.  

I STILL AM, FOLKS!!

it is not acceptable to not be working in our society for ANY reason.  (is it???).

oh, I suppose if I were in a war and had a body part shot off, or a cop injured in the line of duty, perhaps people would respect my inability to work.

then again, people have their stereotypes about those people, too, don't they?

look, I HATE not working.  I HATE not driving.  I feel like I am not in control of my life.  I feel like I still have a lot to contribute to the world.  and I actually do.  more than some of you realize.  but whatever.

what I ALSO hate is not knowing when the world is going to start spinning or the floor is going to start rushing up at me. or falling for no reason.  or the migraines.   not the biggest deal in the world, I know.  I'm learning to cope like others like me.

the absolute WORST part of it all, though, is dealing with people who make me feel inadequate BECAUSE of my illness.

it's not my fault that I don't LOOK sick most of the time!  it's not my fault that I have a relatively rare disorder.  it's not my fault that YOU know NOTHING about it.  educate yourself if you are so interested.  I didn't go to all this physical therapy for NO REASON!  I don't go to doctors constantly or take medications for FUN!  

of course, I am not writing this to offend EVERYBODY.  but, if you ARE offended, I guess you are one of THOSE people.  if not, you've been one of my support people, or, unfortunately, someone like me, and I'm sorry for that, but you are probably nodding your head along with me.  I know from being in support circles that other people's family and friends are the same or WORSE.

anyway, I continue to try to help my family any way I can.  it's not adding up to much, but it's been SOMETHING.  little online jobs, selling things, mystery shopping, book reviews, finding deals and discounts.  and I'm here as support.  it's the best I can do.