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.

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.

on driving

I've got an experiment for you all.

when you meet new people, tell them  you don't drive.

see how they react.

or, better yet, try to apply for a job.

maybe this is just a Long Island thing?  it must be.

I imagine this would not be as much of an issue in, say, New York City, or some place similar.

so, let me back up a little.

I'm still not driving.  should I be?  my girlfriend is adamant that I should not.

she is afraid that I will have an accident.

even though I have managed in the past.

to say I'm frustrated is an understatement.

her anxiety over it gives ME anxiety then.

so...I continue to sit at home every day and do pretty much nothing.

almost every job I look into requires driving.  some make no sense (human resources??)

I have been trying like mad to find work-at-home jobs.  there isn't much.

the driving thing, though...

I feel the longer I don't drive, the harder it will be.

I mean, I once went six years and then was able to drive again.  but I don't want to do that again.

I am way too young to just be a passenger.