My personal thoughts about life with a disability and all other things I consider important in my life.

Thursday, August 31, 2006

Something Clicked

I truly don't know what clicked in my brain, but something did. Monday, 8/28, life became far less dizzy, off-balance, clouded.

With Ernesto tracking up the East Coast, I may be flat on my back again - I don't know. Normally, large coastal storms - Nor'Easters as we call them - make my brain spin like no other. I have guesses as to why, but I truly don't know. Generally, coastal storms are travelling quickly and gaining in power as they come northward. I think the combination of the 2 dynamics is too much for my inner ears to deal with at once, and so sends my brain into a hissy fit of great proportion. I hope not, but we'll find out.

The asthma seems better - which will always make my mood improve. Breathing has a way of making life better.

So, I'm still bitter, still angry and still have a huge chip on my shoulder. But it seems as if maybe, just maybe, the true depression is lifting. The venom has left and now it's just residual again. I feel like quilting, am quilting, and feel like working on the blogs again.

It's really difficult to see what good you do when you consider it all an exercise in futility anyway. LOL I don't see it as such today.

One Day At A Time. ODAAT.


Olberman Pontificates

Keith Olbermann last night (excerpts):
"The man who sees absolutes, where all other men see nuances and shadesof meaning, is either a prophet, or a quack.
Donald S. Rumsfeld is not a prophet.

And he quotes Edward R Murrow:

'We must not confuse dissent with disloyalty," he said, in 1954.
"We must remember always that accusation is not proof, and that conviction depends upon evidence and due process of law.
"We will not walk in fear - one, of another. We will not be driven by fear into an age of un-reason, if we dig deep in our history and our doctrine, and remember that we are not descended from fearful men;
"Not from men who feared to write, to speak, to associate, and to defend causes that were - for the moment - unpopular.'

Wednesday, August 23, 2006

The Day

I really need to learn to shut my mouth and just hang up the phone.

Just hung up on a creditor. We want to resolve this peacefully. Do the right thing. Borrow from other people. Make your parents dip into their retirement.

Like I haven't tried all of those options in the last 5 years. But the last thing I will do is jeapardize my parent's retirement to take responsibility for my debt that I thought I'd be able to pay but got disabled in the middle of.

So, we had a bit of a discussion that ended with me saying goodbye in the middle of his sentance and hanging up. When he calls tomorrow - which he will - I'll get his address and mail a cease and desist letter. Thankfully they can't call more than once a day.

Went to the doc today. He's such a great guy. I wish he could be cloned. So understanding. More than most.

Anyway, he got a first hand glimpse of my asthma, my scarring and my allergies. While coughing and hacking up what felt like a half a lung through a cocktail straw, he said Singulair would work on all of the symptoms except the scarring. Hey - if I can breathe and stop itching without taking 100 mg of Benadryl, I'll take it.

So, hopefully the prednisone will still be working when the singulair starts working so I don't have any time with major symptoms.

Just to have one little thing gone will feel so good.

Bleepin' hornets. Oh - there was an article about them - very scary. I think I'm glad I don't live in AL:

Giant yellow jacket nests popping up all over with multiple queens. Like *12* queens and counting in one nest that's been destroyed. They estimated 100,000 bees in the size of a VX Beetle. The largest "normal" nest has 3000. Mine only had about 25-100.

But why AL? I could understand the other more badly hit hurricane states because of all the trees that have gone down - material for nest building, and all the garbage around for them to feed on, plus a mild winter. But AL? It should be interesting to see what theories they come up with.

Tuesday, August 22, 2006


I want to respond to a comment I just read about finding peace after acceptance.

I've been pretty accepting of my disability. But I also know that any long-term disaster has far reaching emotional consequences. What many people who become disabled are dealing with is a long term disaster. Professionals in the "disaster industry" state the realization that this situation isn't going away anytime soon is at about 3 years. Well, for me, it was 5.

This spring became that epiphany. This isn't going away. I have no income. I have no home. I have virtually no friends. I'm pissed about it. To speak to me of peace at this moment is condascending and ignorant.

My only income in SS. We all know how much that pays. I live with my parents in their home. When they die and I am still in this position, even if they left the house to me, I couldn't afford taxes, upkeep and utilites, much less food. Because I can't get out and socialize, my social network is slim pickin's. Which normally is fine. But when I need something done - like now I need a hand rail installed on our stairs for my father - I have no one to fall back on.

So - yes, I will find peace again. I will accept the nature of my life as it is now. But so many of the people who have been thusly afflicted have spouses that haven't divorced them. I'm not that lucky. Peace is a hell of a lot easier to find when you've got some assurances of where you're sleeping tomorrow.

It's all about Maslow's hierarchy of needs.

5. Actualization
4. Status (esteem)
3. Love/belonging
2. Safety
1. Physiological (biological needs)

The base - Physiological, must be met before anything else can happen - eat, drink, sleep, etc.
The second level is Safety - Security of employment, revenues and resources
Physical security - safety from violence, delinquency, aggressions
Moral and physiological security
Familial security
Security of health

The third step up is Love/Belonging - friendship, intimacy, family.
The fourth step is Status - The lower of the levels relates to elements like fame, respect, and glory. The higher level is contingent to concepts like confidence, competence, and achievement.
Fifth - Actualization:
Maslow writes the following of self-actualizing people:
They embrace the facts and realities of the world (including themselves) rather than denying or avoiding them.
They are spontaneous in their ideas and actions.
They are
They are interested in solving problems; this often includes the problems of others. Solving these problems is often a key focus in their lives.
They feel a closeness to other people, and generally appreciate life.
They have a system of
morality that is fully internalized and independent of external authority.
They judge others without
prejudice, in a way that can be termed objective.
In short, self-actualization is reaching your fullest potential.

(all found on Wikipedia -'s_hierarchy_of_needs)

I was at the 5th level. And now I don't even have the second one locked in, the third is laughable right now. I'm not even looking at the fourth. I know I'm a LONG ways away from that. And the 5th - I'm so angry for having lost that, you can't imagine.

I have glimpses of it through my work for Hancock County, MS, and hurricane relief. But I'm beginning to think that glimpses are a bad thing. I don't know yet.

Monday, August 21, 2006

More Health Crap

8/21 You'd think the vertigo would be enough. But no - I need more.

I referenced not being a stranger to the chronic ilness universe. I had Chronic Fatigue before it was called Chronic Fatigue. It took a few years, but I figured it out and actually became stronger, so was thrilled and probably a little over confident coming into the vertigo.

I also have asthma. It started after a couple of incidents. First, the airbag in my car deployed. Second, I assisted ventilating a house with several CO poisoning victims. Breathing was NOT easy after that one.

Then, right before and during the initial vertigo, I had chronic sinusitis brought on by the glorious air quality of Dallas TX. I had some environmental allergies, but nothing like there. It's taken me close to 4 years to regain my immune system from that 14 month stint. I also had surgery to open up 1 set of sinuses (frontal) that were literally swollen shut and infected.

Carpal Tunnel. Had surgery on one hand. Should have had it on the other. But - they still work even if numb, so what do I care? Plus, I found several exercises that work GREAT at easing the symptoms.

Vitreous detachment. This is a fun one. I'm very near sighted. Myopic - you can say it. No biggie. And I knew I was at risk for retinal detachment, but no one every mentioned this. One day, I had flashes in my left eye - whenever I moved it. Plus, floaters like you wouldn't believe. I kept thinking I had a bug flying around, or a hair in front of my eye. This can lead to RD. Sweet. I keep getting checked, and they keep finding all is ok. Just a huge 'thread' of vitreous hanging out in my central vision. The brighter the light is, the more pronounced this is.

And the latest - bee stings. I get stung every year. It comes with playing with flowers. And normally I don't mind. But this year, I got stung about 10 times by yellow jackets (ground hornets). My allergies are way up, my asthma's way up, I have heartburn like never before, I'm scarring - which makes NO sense. The tiniest scratch becomes this dark ugly thing that makes it look like I'm burning myself with cigarettes. I was on pred, am back on pred. Was on a steroidal inhalor - had to quit because of acute laryngitis. Have increased my antihystamine by 50-100% to keep the itching down.

And of course, when any of these are worse, it seems as if the vertigo is worse.
Lucky me.

8/22 - Last night, I was able to breathe right for the first time in I don't know how long. It seems as if I've been living with half lung function for a month now. You take the deepest breath you can, and you feel like you're going to push your stomach out your belly button, and it still isn't enough. I'm finally able to take a full breath, know it's a full breath, and be able to do it without "stepping" my breathing - breath, hold for a second, breath a little deeper, hold for a second.

It really cuts down on the anxiety. That's for sure. Maybe the pred is finally kicking in. That and a couple of hits of albuterol before you lie down.

I hate that. I feel like I'm speed balling. Benadryl and albuterol together. It's the worst feeling and i have NO clue why druggies do it.


There is little else I hate more than paperwork.

I'm not stranger to chronic illness, but I've never had to be on disability before.

Oh, My, God. I have never seen so much paperwork - AND to have to fill it out annually is just beyond me.

I have a life insurance police - well, if I hadn't borrowed against it, SS would have made me cash it in. So, at least I got to keep it. The insurance company has a disability clause that states it will pay the premium for you, should you be unable to. Woo! But, you have to refile the information annually and bug your doc to fill out his portion of the crap to send in with it.

Then there's student loans. I'm still holding off on permanently getting a forebearance or whatever it's called because I keep hoping I'll go back to work and pay them off. Problem is - you have to send that paperwork in every 6 months.

And bad debt. Writing letters of cease and desist in the phone calls, replying to their requests, filling out the paperwork when served for court.

Going to new doctors - I'm not doing that anymore. But still - pages and pages of forms.

Going on disability! That was a hill of forms. I was so bad back then, I had to get a paralegal to help me. I couldn't read and comprehend. I just couldn't. And it was so overwhelming for Mom. I thank God I don't have to do that crap annually. But give them time - they'll figure out that people would rather drop off the radar then go through that every year. It would save the Feds tons of cash.

I'm sure many people find it frustrating, annoying, and probably overwhelming. But for me, I cry. Almost every time. Trying to figure out what information they want is virtually impossible for me. I just don't get what they want from the way the questions are worded.

I just filled the one out for the life insurance. I'm getting ready to have the information tattooed on my body. I've got a couple already - might as well make 1 useful. At least I'm going to my doc in a couple of days. He can fill out his part - which I try to do for him - and sign it and send it.

Why is it always such an uphill battle?

Call Me Jaded

I joke about how many gues are going to come to my door asking if there is a disabled, dizzy 40 y.o. female wanting a long term relationship.

Truth is, I don't. I'm lonely as hell, but I don't want one.

First - the man I thought I was in a LTR with - the one who said at least a half dozen times that he wanted to marry me - refused to help me when I became ill. Actually, that's a lie. He was willing to loan me $1G at 1 point over prime to be paid back within 6 months. True love, Baby.

Considering that G was a drop in the medical bill bucket, I not-so-respectfully declined and left as soon as I was healthy enough. I still ended up taking 3 weeks to go from DFW to upstate NY, taking time to recover again in KY at my best friend's house.

So, needless to say, I'm not thrilled with the possibility of such a stellar arrangement again. Besides, I figure the only guy who would find a nearly house-bound, dizzy broud attractive is an abusive controlling SOB who would delight in his own personal slave. Thanks anyway.

2nd - I feel relationships are an equal partnership. While I didn't make the money the above AH made (he worked at Texas Instruments), I did bring in landscaping, interior design, and house maintenance. During one of my more spiteful moments, I figured it out. If he had paid for all the crap I did around that house, compared to me paying half of the bills, he'd owe ME money.

Well, I can't do that now. I bring nothing of value to the table. I can't even keep the promise of a clean house, clean laundry and meals on the table. Everything would need to be built to my needs - an open floor plan (fewer bruised shoulders from turning corners too quickly), double decker dishwasher, elevated washer and dryer - front loading, etc. I can't even cover my own expenses. I'm doing my own bankrupcy because I can't afford the attorney.
So how can I trust anyone to not become resentful and use this kind of ammunition against me?

I can't.

Add the inability to drive any distance and not owning a vehicle, escape would be impossible. I will not succomb to what amounts to a debtor's prison.

I mean, how many guys are willing to do ALL the crap they did when single, but now for a second person - which adds to the amount you already do? I don't care what anyone says, it's more work when it's two than when it's one. I've done it. And while a relationship is work, it's also supposed to make things easier and more enjoyable, not more cumbersome.

I have hung out with guys all my life - out of the hundreds I have grown up with, gone to school and college with, worked with, managed at work, had clients of, friends of, there isn't one. And if I haven't found a single one in 40 years, what can you do to prove to me there's one out there? Not a whole lot.

Call me jaded. He doesn't exist.

8/21 - I forgot to add - don't start giving me that crap about "you have so many good qualities" and the infamous "I don't consider you disabled". They hold NO water with me.

My only social network is blood relatives and the internet. I'm able to take baked goods down to our local police department about twice a month, and I go to my chiropractor's twice a month. That is the extent of my socialization. I see 7 people regularly. Another 3 or 4 once a month and another 5 or 6 quarterly. That's it. You count the number of people you see 4 or more times a month, and then start giving me that crap.

Sunday, August 20, 2006

Ups and Downs

There are some days where I think, "I'll beat this thing and get back to living." And then there are days like this summer.

Last night and this AM, I had hope. I was day dreaming about taking on yet another profession - a skilled trade like electrician. Plumbing would be cool too, but they have a lot of heavy lifting that I really don't feel I'm up to. I'm 5'3". Strong for my size, but still short.

And then, this afternoon hit. I went to a fabric store and have come home twirling. Brain is just trying to rip my eyes out of their sockets to spin in my skull. I hate that tug.

Plus, I'm still not over the stings. I got stung about 8 weeks ago by a yellow jacket nest. I was put on benadryl and prednisone with a script for an epi pen, which I got just in case. I've been stung once or twice since then (I'm outside a lot and generally get stung berry picking). Yesterday and today - a full 2 months after the major stinging - I've had to take oodles of benadryl to stop itching. That's being on another round of pred too - asthma is the worst in 4 years.

So - optimism isn't as high as it could be.

But, I keep on keeping on. I'm making 2 quilts for a friend - 1 in process now, the other patiently waiting. I have cukes and summer squash soaking in salt water to make bread and butter pickles later. And have done my normal cleaning.

Odd as it sounds - that's where I find my hope. I started my rehab with cleaning. Sweeping the floors was all I could do. But I did that every day. Graduated to sweeping AND vacuuming. Ooo. And just kept adding to the list until I was able to do yard work like mowing, making a couple of retaining walls, etc. So, I'm going back to that. The dizzies are killer, but I can still sweep and vacuum. So I will.

Going to the store was too much, and was only there for 15 minutes, but with the past few weeks having been what they were, it was too much. But I did it anyway.

That is the life of a vestibular patient.

Saturday, August 19, 2006

Wild Child

I've been working on taming this cat for, oh, 3 months now. He's just a kitten, and has obviously reversed his starvation enough to find squirrels a worthy adversary. LOL

We ended up setting a tall step ladder against a radioshack/shed behind the garage that he could jump down to, luring him with BBQ chicken - he'll risk his life for that stuff! Once we let him get down without being watched, it took 2 minutes and he was strolling across the yard for more chicken.

Cicero is his name. It was Chamille before we saw definitive proof he was a boy. Chamille due to being a chameleon.

You can see the tarp covering the radioshack's roof - what he jumped down on and then figured out the ladder in no time! Since we all know there will be a next time, I'll get pictures of that.


I don't know why, but this Leonard Cohen song really hits home. It's been stuck in my brain for days - along with a Cowboy Junkies tune You're Missing.

Now I've heard there was a secret chord
That David played, and it pleased the Lord
But you don't really care for music, do you?
It goes like this
The fourth, the fifth
The minor fall, the major lift
The baffled kind composing Hallelujah

Chorus of Hallelujah

Your faith was strong, but you needed proof
You saw her bathing on the roof
Her beauty and the moonlight overthrew you
She tied you to the kitchen chair
She broker your thrown and she cut your hair
And from your lips she drew the Hallelujah

Chorus of Hallelujah

You say I took the name in vain
I don't even know the name
But if I did, well, really, what's it to you?
There's a blaze of life in every word
It doesn't matter which you heard
The holy or the broken Hallelujah

Chorus of Hallelujah

I did my best, it wasn't much
I couldn't feel, so I tried to touch
I've told the truth, I didn't come to fool you
And even though it all went wrong
I'll stand before the Lord of Song
With nothing on my tongue but Hallelujah

(Chorus - repeat)

Friday, August 18, 2006

What I lost

Most disabilities mean the loss of some freedom, some abilities. Often, these are replaced by an enhancement of other abilities. It's just the body's way of compensating for the loss. Also, when there is a loss of ability, there is generally a second half of the body that can help assist with the bilateral side of loss. You lose an arm, a leg, an eye, a kidney, a lung. All of these have a second half - they are one of a pair that allows you some form of maintained ability - albeit limited.

Vestibular systems aren't like that. If you lose half, you basically have lost it all. It's both mechanically and electrically driven. If the electrical system (nerves) get shorted out like mine, it doesn't matter if the mechanical (inner ear fluids, crystals, etc.) is working perfectly. Shorted wires will never transmit the proper signals no matter how much it tries, and as in my case, the doctors will tell you "either your brain will rewire it or it won't". Sweet, huh?

So, you have signals from your eyes and feet that are working fine but are in complete conflict with the nerves in your ear. Hence, the dizziness, imbalance, and outright vertigo.

Because of that, any signals you get from your feet - say, from walking - will make you dizzy. Any signals from your eyes - say, from reading - will make you dizzy.

For that reason, I have lost just about everything.

Not only have I lost my home, my job, my car, my savings, my credit rating and my social life, I have lost my ability to read much, write much, drive, walk any distance, use any type of power tools, talk on the phone, be in crowds, watch action movies (like Runaway Bride) and work for more than 20 minutes at a time, for no more than 4 hours in a day with a 2 hour nap in the middle. Even if I did get enough money to have my own place, most days I can't cook, most weeks I can't do my own laundry, and the general upkeep of even the simplest construction project lands me on the couch for a couple of days.

Drugs help (as do prescription meds) - just kidding. Meclizine - Antivert, helps, but only masks the vestibular system. It doesn't fix anything. So, if you take it too often, you end up worse than before you took it. They can give valium, but I'm not into addictive meds, thank you very much.

So, life is give and take. I can go for a walk, but only if I'm willing to spend more time than usual napping. Ditto for reading, writing, talking on the phone, blah blah blah. I can drive a total of about a mile a day. That's it. I can ride in the car, but again, more than 20 minutes, and I'm toast for a day.

My life is all about trades.

A humorous example of my social life:

A friend who's in construction was putting a new roof on my parents' house. I asked him if I could bake anything for him (I'm The Muffin Lady to those in the know). He told me I didn't have to do that. I told him that he and the two other guys were the first men not related to me and under the age of 70 that I had seen in a year. The least I could do is make some muffins.

He almost fell off the roof laughing. But it was true! THAT is my social life.

6 Weeks

First off, I live similarly to the blind. I have the layout of the house virtually memorized so I don't need to use my eyesight to figure things out. This saves the brain so much effort!

So - when things change, life is difficult.

My education through exercise physiology tells me the body needs 4 weeks to become familiar with new moves, new motions, new weights, etc. BS. Maybe for 'normal' people. But it takes my brain and body 6 weeks to figure things out and become familar with them.

Let's take the last 2 weeks as an example. My father moved a cabinet out of the house. I was given a new printer (way cool! - thank you Mom and Sister!) which meant the office needed another shelf unit and rearranging of half the room.

My body will need 6 weeks before it's used to this arrangement. And this comes after changing the bathroom door 4 weeks ago. Because of these changes, I'll be dizzy for a total of 8 weeks, figuring no more changes to the layout of the house.

My aunt visits 2-3 times per week. She also goes to FL for 10ish weeks in the late fall. When she comes back, it takes me 6 weeks to not be dizzy after she visits.

Visiting my sister for a week makes me dizzy for at least 2. The week I'm there and the week after to readjust to my surroundings. Better than 12 - 6 there and 6 back. But it really gives people an idea as to WHY I don't like to travel. Forget the actual vertigo from riding in a car for more than 20 minutes.

And all through this, my cognitive ability is shot. Thinking, understanding English (which should be my first language), simple concepts, simple addition, writing, understanding the written word, speaking - are all so difficult I tend not to do any of them.

6 weeks. You try it.


I know it's probably wrong of me, but I get so sick of people telling me that I should be thankful for what I have. Look at all the people who have lost so much through natural disasters, wars, injury, illness, etc.

You really don't want to know what my telepathy is stating to these people.

Natural disasters - yup. They lost it all. So did I. They can rebuild. I can't.

I moved away from my home town over 10 years ago. Loved it! I lived the life of a gypsy. I moved, on average, every 14 months. I finally got through college, worked in my field, LOVED it, and was enjoying life.

I lived in several towns in NYS, lived in Louisville, KY area and in Dallas, TX area. Loved L-ville. Hated the Big D.

I got sick in Dallas. That's the beginning of the end. I went deep into debt trying to get healthy and live there all at the same time. It didn't work. I ended up moving back to my home town where, rural as it is, had more aggressive medicine than DFW. I had hoped to have my sinus surgery, get healthy and move on.


Lucky me, I got what is affectionately known as Vestibular Neuritis. I should have been done with it in 3-6 weeks, but because 90% of Dr's don't know you need rehab within that time limit, I became one of the even luckier few that doesn't recover. So, with some research, I found out that half of those who don't recover in those first weeks will do so in 8 years. 8 YEARS.

OK. Fine. I can deal with that. 8 years out of my life. But, if I recover, no big whup.

Well, I've entered year 6 and have hit a plateau. If anything, I've regressed some. And from what I've seen with others in my shoes, that's normal for the half that don't recover. Ooo. Doesn't that just thrill me all to pieces?

Another thing the docs don't tell you is that season changes affect you. I'm OK for the latter half of the summer and winter. But spring and fall are killers. So - here I am, having regressed some over the summer - which is supposed to be a good time for me, and autumn is rapidly approaching.

People tell me not to "project" or play the "what if" game. Well, there's also the saying that insanity is doing the same thing over and over expecting different results. I know autumn and spring suck. They have for 5 years, so why it would change now is beyond me. And expecting it to change is crazy. So don't give me that crap that I'm worrying over nothing, that I'm mourning something that has yet to be lost. My loss is real. And that I will lose more over the sucky seasons is real.

Thursday, August 17, 2006

5 Years and Counting

I have Vestibular Neuritis.

Did you know there are 13 different diagnoses for being dizzy, off balance, vertigo or other "vestibular disorders?

While this blog is about mine specifically, I'd love to hear from folks who also have "invisible disabilities". Those which people can't see, but you have to have one of those disabled signs for your car. The ones that people give you dirty looks over.

Or better yet - the "You don't look disabled to me", "I don't consider you disabled." That's my personal favorite. And then there's, "you're only disabled in your mind."

Well, until one of these statements pays the bills, allows me to have a social life, allows me even just one of the things I no longer am capable of doing, I might actually listen. But they don't. So I tend to tell people to go bugger themselves and walk away crying yet again.