So, why don't I just get a job?

You've seen me at a restaurant, or maybe walking past you on my way home from somewhere. Maybe you've even seen me where I live now, in the pool or in the gym lifting weights.
You probably think to yourself, "hey, she looks fine, why doesn't she work?"
Maybe you've even whispered about it behind my back. No, I'm not paranoid, whispering behind other's backs is something people do, even you. I can almost hear it. "Hey, look at her- she's lifting weights, surely she could work?"

Consider this. How many hours are there in an average work day? 7? 8? Is it safe to assume that you haven't watched me for a solid 7 or 8 hours on any given day? Can I also presume that you aren't somehow watching me for that amount of time 5 days a week, the length of the average work week?
If so, then you couldn't possibly begin to know anything about whether or not I am able to perform a job. I am certainly capable of doing several, and I have, until 5 years ago, but that is not the issue.

As I said in another post, "what do you do? (for a living)" seems to be the most common question that people ask not long after meeting another person. I have a problem with this question, for two reasons. First, I don't define myself by what I "do" or how much money I have, and secondly, ask yourself how YOU would answer if you did not work.

Sooooo, what do you do?
What do you DO?
What do YOU do?

Nothing, I guess. I do absolutely nothing, because everyone knows if you don't get a paycheck, you don't "do" anything...right?

Okay, well, what if I do get a check? What if I get disability, child support, spousal support, social security or I live off of my trust fund? Then I suppose the answer to what I "do" would be I'm "crippled", crazy or mentally challenged, or I spent my life as a human-'baby-spewing' "Pez" dispenser to such a degree that cannot work because I have to spend all of my time taking care of the children, or I couldn't "hang on" to my husband and felt that because he left me, it was his responsibility to keep me in the lifestyle to which I was accustomed, or maybe I'm just retired and look REALLY good for my age, OR, maybe I actually have more money than you could ever hope for, so much that I, unlike YOU, don't HAVE to work.

Am I OBLIGATED to tell you? Fuck no. It's none of your goddamn business. Do I care what you think about it if I do? Why would I....? You're the one who defines yourself by what you do. Take THAT away, who are you, again...? I'm sorry, I don't seem to remember you...have we met? Didn't you used to....? Oh, so you don't do ANYTHING now? How sad for you.
*gazes down at shoes, in mock mourning for person's lost identity*


Well, since you asked what I do, or you will, I'll tell you what I did and why I don't....


For starters, I've had no less than 45 jobs in the 22 years that I worked. Those are the ones I remember, but I know there were a couple more. I have a bit of difficulty focusing on most things for too long, some things longer than others. I haven't ever really finished many long-term projects or goals.
I was VERY good at GETTING jobs, luckily. I often left when I got bored or just before they were probably going to fire me for either talking too much or being late all the time. That happened usually in 3-6 months. My longest job, running a small computer network at a chemical distribution company, which was also my last one, was a little over a year.
I left THAT one because of all of my combined issues.

I wasn't diagnosed with ADHD until I was 37 years old, ironically, the same year I had to stop working anyway. The medication was a great help but I wouldn't be able to be on it for very long due to another problem.
Currently, there is no medication I can take for it, so I, (and my husband, and everyone else,) must deal with it without any. At least I know what it is, which is more than I can say for nearly half a dozen other health problems I have which took a few years to diagnose.

Yes, I LOOK perfectly 'healthy,' I suppose. Some have even said I look better than a lot of women my age. Well, at least I have THAT, I guess.


So, if you've ever wondered why I don't work, or think you might be the person speculating about it, you might want to bear with me here; it's rather long.



After living with excruciating pain in my neck, terrible and frequent headaches, and later, shoulder and upper back pain for nearly 20 years, and after spending nearly 2 years at various doctors, I was told that I not only have 2 herniated discs in my cervical spine, but, at only age 38, I had already developed Degenerative Disc Disease. Mine causes extremely bad muscle spasms in my back and neck, (to the point where the muscle is like "frozen turkey," and full of what they tell me are "adhesions",) and is all but inoperable because of the instability of the discs above and below the herniated ones. It's not a matter of if the other cervical discs will herniate, it's now when. There are also bone spurs growing into openings for nerves that are causing pain now as well. It's not every day, and some days it's much worse than others, but when it's bad, I'd like to tell you where you can stick your "what do YOU do?" What do I do? I hurt. Often.

The only medication thus far that has helped me, because of the way my system reacts, with spasms, is Valium. A LOT of Valium. On a good day, I don't need any. On an average day, I might need about 30 mg. and on a really bad day, I have taken up to 90 mg. in one dose.
YOU WOULD DIE FROM THIS. YOU would become addicted. I, on the other hand, don't have a normal metabolism, (more on THAT later,) nor am I burdened with that "addiction" thing that so many people have. I don't have side effects, or withdrawal when I don't take any.
Case in point: I ran out in February '06 and have been too lazy to find a new doctor since I moved here.

Hey, so, do you know anyone who doesn't mind hiring a person who has to take...a LOT of Valium and probably has to call in sick every few days? Feels like rain.... Wanna know how I can tell? Because I hurt.

If this were the end of my problems, I probably would still be working, and in fact, I was still working when I was JUST dealing with this stuff, minus the Valium, of course, but it goes on.
This could read like the synopsis for "Mystery Diagnosis." A really loooong one.


I had some giant "floaters" in my vision....no big deal, right? They'd been there for about 10 years. Then I saw some sparks. A few times....Then one day, I noticed a dark fingerprint on my contact. Or I thought it was a fingerprint, but it actually wasn't. I saw an opthomologist, who said that the eye with the dark area in the center of my vision looked MUCH BETTER than my OTHER eye! THAT eye, she said, had 3 separate problems- the worst of which being the blood vessels inside that burst and were bleeding UNDER my retina, threatening to tear it loose.

I saw a retinal specialist who was a bit blase about the whole thing, but told me that basically, blood vessels had burst inside both eyes and bled into my line of vision. Nothing to do about that, really, he said. I also had chunks of vitreous humor, the "jelly" in the eyeball, coming off the back of the inside of my eyeball, ALSO threatening to pull the retina with it.
He told me to "come back if you suddenly lose your vision," and to "try not to be under any stress."
Which I thought was odd, since I had stopped working shortly before that, and wasn't stressed anymore, I thought. (I didn't know how wrong I was.)

I was given a grid to look at every day. I realized that I saw what were actually straight lines as wavy in some areas. Huh. No WONDER I kept putting things on the wrong line in Excel at my last job!

The bleeding happened again. I had to have dye injected in my arm so they could do imaging of my eyes. The good news, my eyes weren't bleeding anymore by then. The bad news, the damage was done and there wasn't much they could do. My "floaters" now number in the dozens and impede everything I look at; I'm going to name them all, since they all have different, recognizable shapes. The bleeding still happens every so often and my vision changes again, but not as badly as the first two times.
Now, my CORRECTED vision is about 20/60. Ironically, even though I'm in my 40's, I'm not far-sighted, (I've always been extremely near-sighted, anyway,) but now, I STILL can't read menus in restaurants, small print, see the details of ANYTHING, no matter how close or far it is to me...I also have trouble distinguishing things in low-contrast situations. Driving at night...not great anymore, especially at dusk, when it's all grey, and in the rain. Anything with a light has streaks that obscure everything surrounding it. And I've recently found out that I have a condition that is the precursor to macular degeneration, called "drusen," and I AM slowly losing my vision.

The job field is starting to narrow, isn't it?

Wait, it continues.

The retinal specialist didn't explain WHY I had this problem. All he said was that it normally happened to "men over 50/seniors, diabetics, and hypertensives." As far as I knew, none of those applied to me.

I was wrong.

I'd been noticing that, frequently, my face, hands, and sometimes an ear or two and possibly even my feet would get hot and red. My face/ears/upper chest were doing this whenever I was angry, excited, etc. It happened with one sip of alcohol, too. Sometimes for "no" reason.
Temperature changes of any kind had always affected me, but I felt like I was having hot flashes.
At my job, after one angry phone call, my co-workers took my blood pressure, and it was something like 150/110. Pretty high for my normal 110/80.
I'd had some chest pain off and on, too. Wasn't my gallbladder, like doctors thought.

Meanwhile, I ended up back at the Rheumatologist, who'd initially told me I had Fibromyalgia, (kiss of death diagnosis, means they don't have an answer.) I didn't have any connective tissue disorder that I'd been tested for, (I'd also had joint pain off and on, and extreme exhaustion for years by this point.)
But, according to him, I do have not only "Raynaud's disease," but another, similar but opposite vascular disorder, a rare one, called "Erythromelalgia," which manifests with red, burning hands, feet, face, etc. like I described. There's no cure for it either. No real treatment, either, only situational management. Zoloft was thought to help, so I was put on that. I'd had to quit a few jobs because of these symptoms. Climate control is VERY important in MY world now.

Now, back to my blood pressure, which by this time, I was pretty sure was actually "high," even if my doctors hadn't figured it out yet. I asked my PCP to schedule me for a stress test, since I was now 40 and have a strong family history of heart problems, the "problem" being DEATH. Prior to that, I'd had her review the history of my BP readings, and they were mostly borderline. I had never had "whitecoat" high BP in the past, either, and used to have very low BP.
She wanted to put me on some diuretics, but I didn't want to take them considering I'd recently had a major reaction to an antibiotic that was a sulfa drug, which the diuretic contained.
I had imaging of my heart and the stress test- and my heart rate was up to 170 within the first minute or 2 on the treadmill. (Though, I had no trouble breathing because I'd been a singer.) They pulled me off after that. My BP was borderline high before I got on. The people who tested me INSISTED I take the diuretic since they said I needed to get my heart rate more stable and fast.
Of course, after taking one pill, I had a reaction, so I didn't take it anymore. My doctor, not the brightest bulb in the chandelier, said maybe I didn't really need to be on BP medication. I insisted she then send me to a cardiologist for THAT decision.

A side note: It was the high blood pressure spikes, combined with a racing, pounding heart, that I was having whenever I would get angry, excited, or basically do anything but sleep that mainly caused the bleeding in my eyes. It hasn't exactly stopped...

At the cardiologist, I got probably the biggest shock so far. I told the nurse what's been going on with me...all of it, since they require you to fill out various checkboxes, etc. I happened to mention something that I never brought up to a doctor, (because to me, if it doesn't HURT, I don't really think about treating it, or worrying much,) which is this odd "glugging" sensation I get in my chest on the left side, mostly in bed, when I roll onto that side...kind of like if I had a 2 liter bottle of soda in my chest and turned it over.
When the doctor came in, he asked me a few odd questions that didn't seem to have anything to do with my blood pressure, the reason I was there, then put the stethoscope on my chest in only one place, on the left, pretty low- I don't think anyone's ever put it there. He listened, made me lie down, sit up, then sat down and said, "Now, do you want to know what's wrong with you?" I assumed he was being sarcastic, because I wasn't there for a "problem," so I said, "yes, I know, I'm crazy and it's all in my head." He just looked calmly at me and asked the same thing again. Now I was worried/curious.

He told me that I have a valve problem for one.
Mitral Valve Prolapse is relatively common. My mitral valve, however, "regurgitates," e.g., it leaks blood back into the left ventrical. I later had to have an echocardiogram to find out how badly. I have a 1 in 100,000 chance of needing a new valve.
I also have to take antibiotics for any kind of dental work because I can't take the chance of getting the bacteria introduced into my bloodstream and causing a valve infection.

But that isn't even all of it.
He told me that I also have something that sometimes seems to accompany MVP...it's called "Dysautonomia." He said "in your case, your body produces TOO much adrenaline...it thinks it's ALWAYS under stress...." No MATTER WHAT I DO OR DON'T DO. He gave the example, "If I injected you with X amount of adrenaline, your heart rate would go up to 200 bpm, whereas, a normal person injected with the same amount would go up to about 90."
This was also the reason that I'd suddenly lost a lot of weight and was barely hanging on to 98-105 lbs. I had been "exerting" myself by singing in a band...about 2-3 times a week, (well, if you count rehearsals!)

He put me on a beta-blocker right away and told me I need to exercise. The other doctors all told me to swim if my spine couldn't tolerate anything else.

I'm STILL on the beta-blockers, which slow my heart and lower my BP, (and, damnit, my metabolism!) as well as help with a lot of the things that made me feel so shitty, like the tiredness, the achy joints...ALL from the faulty valve, it turns out. Even the 'lump' in my throat that no one could diagnose went away- it was just a muscle spasm.
They DON'T help a lot of the other things my over-active autonomic nervous system does, though. The muscle spasms I have happen because of this. Insomnia, strange wake/sleep patterns, hyperactivity, difficulty regulating body temperature...basically anything controlled by the autonomic nervous system is NOT running on a schedule of any kind, so neither am I.
Since that system controls basic functions like breathing, body temperature, heart rate, BP, digestion, etc., well, you should be able to imagine the kinds of problems when it is permanently short-circuited...or rather, in overdrive.

On the other hand, this 'overdrive,' is the reason that medications and alcohol don't have the same affect on me as they do you- it's why I have a higher tolerance, and why I don't have withdrawal...
Oh, yeah, I have some mood issues, too...(Sorry, honey!)

So, here's the summary of why I don't work...and yeah, I have plenty of medical documentation...

Degenerative Disc Disease
2 herniated cervical discs, (bone spurs, cervical stenosis, mild spinal cord compression)
mitral valve prolapse syndrome/regurgitation/dysautonomia
raynaud's syndrome
erythromelalgia
retinopathy/macular degeneration
adhd
........Did I miss anything?

Actually, I did. Those are the NAMES of the conditions. It isn't an all encompassing list of what it's like to have all of these things going on.
Maybe I'll post about THAT sometime.

Know anyone who can hire me? I can work...late afternoons...on the days I fell asleep the night before. (It's 4am now.)

And, IF I didn't hurt too much to manage a shower...which I usually do by 3 or 4pm, on good days. (My left shoulder has been hurting for a couple of weeks, since I started swimming. Who knew how much you move your neck in there? Not good for me, not if I want to keep the use of my arms.)

Oh, but I do need to have my work area at a fairly constant 75 degrees or I'll have hot or numb hands and feet.

Oh, I forgot to tell you, I have allergies, but I'm more sensitive to chemicals, so I can't be around anyone that wears perfume, and no air fresheners, either. Or smokers.
(The ADA will back me up, if necessary.)

Um, yeah, so, also, I will not be able to stand comfortably for more than 10 minutes and if I will be sitting, I must be able to put my feet higher than my hips.
(I can, however, kick or punch for quite a while. I just can't do anything repetitively in a downward or upward motion with my arms, only out in front of me. And I don't feel much on the surface of my hands or arms, either.)

I can't see details anymore, and I'm very easily distracted. (Did I mention that already?)

I'm also extremely impulsive and I'm late for everything because I honestly have no concept of time. (I never did do well in customer service.)

There are some days when I may have to show up on up to 90 milligrams of Valium, and, as my spine problems continue to worsen, the medications will likely grow.

...And, oh, yeah, I can't really be pressured or put under any stress. I'm on some medication for it, but it only helps my heart, not the rest of my system. It thinks it's stressed anyway.
Valium might be "mother's little helper," but I'm nobody's mother, and it doesn't do a damn thing for my 'stress.'

If none of this is a problem, then I'll see you on...Tuesday or maybe Wednesday, around 4ish.

EDIT: June 08- I'm on Morphine Sulfate for my lower back, now, but thankfully, my neck doesn't hurt like it did, and I'm permanently off of Valium, which was not compatible with the Morphine anyway.
I don't need beta-blockers for my heart/BP as long as I work out regularly, though my back pain from the bad disc(s) around L4-L5 has gotten so bad that I need 15 mg of morphine on any day that I will be on my feet for more than 10 minutes, and up to 30 mg if I have to be active, or sometimes if the weather will be bad.

I don't see any better, but at least I'm starting to get used to the giant PVD tear that left the huge floater in my central vision last year, and so far, my retina hasn't detached.

As long as I'm not getting stressed, my nervous system runs much more smoothly, with fewer ups and downs, but not like a "normal" person's...