:: jaded elegance, v.3 ::

“I’d rather have 30 minutes of something wonderful, than a lifetime of nothing special.”-“Steel Magnolias”

I am, sadly, still struggling with my health. I tried my best to have a good weekend, celebrating at my favorite Italian restaurant with some of my favourite people, and playing trivia with some of those same favourite people, plus others I always look forward to seeing. But, dizziness, light-sensitivity, a feeling of pressure on the top of my head, and feeling spaced out and hating the world cast a pall over everything.

I have so many good things in my life, but my body won’t let me enjoy them. I have opportunities I’m not always physically up to handling. Whatever is wrong with me has destroyed both my mind and body, and I’m not sure I will come back from this. People either tell me to pray or keep a positive mindset—which makes me irrationally angry, because I cannot believe that hope and smiles and rainbows and blind faith will cure what science cannot— or, they tolerate my incessant struggles with anxiety and depression, and I have no idea why. I’ve become so self-consumed with this invisible illness that not only can nobody else see, many are convinced only exists in my head, that I bore myself. In social situations, I wouldn’t have any interest in getting to know me. It’s one thing to be unattractive and feel that makes you wish to keep away from social situations. It’s another to realise just how tedious your company is, to both yourself and others.

I sent this e-mail to The Guy I Am Currently Dating today. I wish my doctors could see it, too.

“Every day is different. Most days are crappy.

I just want someone to understand and find me some answers so I can go back to living my life and planning for the future. And so I can *have* one.”

That is how I feel today. I have a list a mile long of things that I want to do; but it’s necessary for me to be healthy and energetic and young and attractive and friendly and vivacious in order to live my life on my terms. I am too stubborn to be willing to accept these limitations will define me, will define my life, for whatever amount of it remains.

People my age should be worried about their careers and love lives and making the most of the prime of their life, not thinking about death and putting their affairs in order and making sure nothing has to be too complicated or unpleasant for anyone else on that day I inevitably don’t wake up.

Everything has changed, and I just want my life back. Even if it’s something I only get to have for a little while, I want to look and feel normal, to have some of the adventures that are still waiting for me, to know that I may not be around forever, but I have the energy and joie de vivre to not waste a single second or ignore a single chance for something amazing to touch my life.

Oddly enough, I do pray sometimes. I do attempt to meditate and calm myself. I do attempt to read about my symptoms in hopes of stumbling on to something 13 doctors have ignored, and relate to the thousands of people who post their stories of “Nobody knows what’s wrong with me, I’m scared, it’s destroyed my life, and everyone just says I’m depressed/anxious.” I do try to have a positive attitude. But like everything else, there are simply no answers, just more days passing by, while I watch them from my window.

I just want my life back. It wasn’t the best, it wasn’t the worst, but I was healthy, energetic, and always up for a fun adventure. I had my freedom. And, that, I value more than anything; more, perhaps, than life itself.

“We must overcome the notion that we must be regular. It robs you of the chance to be extraordinary, and leads you to the mediocre.”—Uta Hagen

Life has been a fairly stressful endeavour for me lately, but I feel as if I’ve been pushing myself, and I think that’s a good thing. Unfortunately, largely due to the types of drugs I am on, I don’t really have much stamina and endurance anymore. I used to be able to sit and work all night long if I needed to, or stay out until the sun came up, partying with my friends. These days, at some point, I inevitably start to feel tired and shaky and as if the only place I want to spend time is my bed.

The main stressor in my life is the work situation; courtesy of some recent changes, I’m working twice as hard (or at least 1.5 times as hard), but the net result is a paycheck that’s 50% smaller. I know this has probably caused some people to either decide to leave the company, or to buckle down and try to become a veritable factory of quality work, but I need stable income in order to pay my bills, never mind get the medical care I need. The logical alternative is to work harder and try to complete more articles per day, or look for additional projects to supplement my income, but my lack of stamina doesn’t just affect me physically. After 4-5 hours of solid, undisturbed work, I feel both physically and emotionally exhausted. It is the time in my life I can least afford to be ill, and yet I have little to say about the whole deal. On top of it, the company has now instituted a 24-hour turnaround on all assignments, and have made it clear they don’t intend to be too forgiving towards those who don’t meet deadlines. I suppose they look at it as if everyone’s replaceable, and nobody indispensable, which is largely true.

Yet, I’ve been doing my best to restructure my life to make myself stronger and keep up. I don’t really have the extra time and energy to seek out new assignments, or try to find a new job, so it’s mostly taking it one day at a time. It’s just a sad realisation that I won’t be able to make it working on a freelance basis with this pay cut. For over a year, I’ve made a nice income for a single person…more than I’d make working in an office, waiting tables, or giving people coffee at Starbucks. It’s even more than I’d make becoming a teacher or whatever else people with degrees in liberal arts subjects end up doing. But, that’s the income I need to make in order to improve my life…and it would have, significantly, had I not gotten seriously ill in 2011…and not half that sum. I don’t feel like I have a lot of options, and I feel a bit depressed about everything sometimes, which is far from productive. I just wonder why someone with as many talents, varied life experience, and unusual personality as I possess can’t figure out how to use any of those assets to get a stable career that I enjoy off the ground. Sometimes, I wonder if work just isn’t my thing; other aspects of life have always come easily to me. I was always smart enough to do well in school, personable enough to succeed in the social aspects of life, interesting enough to not have trouble meeting people to date or starting relationships, clever enough to formulate a nice place to live even when I had very little. When it comes to money, though, I have always struggled.

Herein lies the problem. I like money. I like shopping and martinis and nice restaurants and jewelry. And I am not lazy; if I knew what I needed to do to make the sort of money I need to comfortably engage in the type of lifestyle I’d like to have, I’d do it. I don’t want to be a millionaire, or part of the 1%, or even well-to-do. I just want to never have to worry about the practicalities of life, and still engage in the little frivolities that make my world a better place.

All the things that interest and intrigue me aren’t skills that translate to making money; the blogging habit I’ve had for 10 years, the book I’m working on (that nobody will ever read), the poetry I write, the parties I throw, the events I plan, even if I were to take up acting again. Nobody pays you just to be unique and creative and different and fabulous in that weird way that makes you stand out. It wins you friends and admirers, it makes you enemies, it throws adventures in your path, it makes life interesting…but it does not pay your bills, or your medical expenses.

For those who don’t know, in addition to recently being diagnosed with a vestibular disorder called vestibular neuronitis, I’ve also been diagnosed with panic disorder. Panic disorder sucks, and I don’t know why I’ve suffered with it for the past six months, but after reading the Wikipedia entry on it, it’s clear that I have it. I believe I developed it when I developed the vestibular neuronitis, following a severe sunburn and subsequent infection and dehydration from not taking care of myself wisely on the beach. I had a number of panic attacks over a period of two or three weeks before visiting the ER for help, and the ER, as well as a number of doctors who misdiagnosed my symptoms, put me on drugs with some terrible side effects. The result is that any time anything feels wrong with my body, I have a type of panic attack. It can range from mild enough that it’s gone within 30 seconds of changing my surroundings to needing to take an extra 2 milligrams of Valium to simply needing to leave and go home. (the last kind, the most severe kind, typically triggers a migraine. Within an hour or two of rest, Coca-Cola, and someone comforting me, I am typically better, although left very drained.).

The doctors have recommended that I see both a specialist for vestibular rehab and a psychiatrist who specialises in panic and anxiety disorders. I’ve been a little hesitant about doing these things, although I know I need to, because I know they may make me feel worse for awhile before things improve…and I simply don’t have the time to feel worse. I can’t afford to get fired because I was too busy freaking out to work.

I also would like to get off my current medications, the ones that cause me to resemble the Goodyear blimp and gain weight if I eat more than 800 calories a day. Psychiatrists, on the other hand, just want to switch you to whatever drug of choice they believe is most helpful. I have at least four types of commonly prescribed anti-anxiety medicines in my cabinet. They all made me feel like I’d rather discontinue existing than take that pill, which seems kind of contrary to the point.

They also told me about something called “cognitive behavioural therapy”, where I teach my brain to react in more positive ways. (obviously, nobody gets that my mind and body falling apart are reasons for my brain to feel less than positive, and for me to every day remind myself “What the hell happened to the charming and attractive person I used to be?”.) It’s basically “face the fear and do it anyway, unless you have a panic attack”.

So, I’ve been trying. I went out to dinner with a number of friends on Friday, and when I got there, immediately felt lightheaded and dizzy because we were seated on the highest possible level (seriously, in another room, we could stand on a chair and touch the roof. If it were a house, it would be really cute and I’d love it. ) There were also flickering lights, both of which seem to trigger vertigo and feelings of panic. I managed to ignore it, and even stood up for about 15 minutes to converse with people at the other end of the table. (standing up for too long often makes me want to fall down.) In the end, it ended up being a very good night, but it took a lot of discussion with my brain to get me to that point.

Today, I decided I was tired of being fat, when the scale hit the highest number I’ve ever seen in my life. My metabolism is slowing down to the point where I could not eat for days and not lose a pound (yet, I can’t do that, because the drugs I’m on make me light-headed and mess with my blood sugar if I don’t eat enough.), and I know/have heard of people on the drugs I’m on gaining 50-75 pounds. There is no way I’m letting that happen to my body. So, I decided to fight back and go for a 10 minute walk. It was exhausting, since one of my anxiety triggers is wide, open, overwhelming spaces. (I can’t set foot into Target without hyperventilating, which is apparently not uncommon for people with this inner ear disorder.)

I felt panic setting in twice, but I focused on telling my brain “NO, I’m going to walk for 10 minutes, period.”. Every other day, I’m going to add a minute to my walk, and slowly try to increase my endurance. This will, of course, not burn any calories, but at least it will get me outside again.

My well-intentioned roommate cooked tonight, making a chicken pot pie recipe he found on the low-glycemic recipe site I sent him. Little did I know, he “adapted” it, adding a ton of fat and calories and carbs. He really is a very good cook, and I applaud him learning to cook…but since he has, not only has he gained a noticeable amount of weight, his best friend is also starting to sport a bit of a belly. It could be that we’re all going through middle age, but I think it’s more of a “Don’t cook like Paula Deen” issue.

I may have to learn to cook healthy recipes, although I hate cooking, so I know I have control over what’s in what I’m eating. The problem: I really hate cooking.

I never knew that feeling and being healthy could be so difficult. I always took health so much for granted. I’d give absolutely anything to be able to rewind my life a year, and feel the way I did then. I would never take the ability to feel and look good, to seem “normal”, for granted again.

The only blessing that I have in my life is the supportive network of friends who seem to care and stick beside me, no matter what. I know they miss the person I used to be, too, but I’ve gotten an immense amount of support through things. The prideful, egoistic part of me simply wants to hide away from everyone until I’m better, rather than have people ridicule me for being fat or talk about how difficult I was the last time they saw me. I don’t want the world to see me when I’m unattractive, fragile, or just a downright unpleasant person.

But, another part of me is reminded that’s what friends are for, and nobody judges me as harshly as I do myself…except,of course, the people who hate me. They don’t cut me one bit of slack.

I just get sad sometimes because I know, deep inside, there’s this person who is so much better—on so many levels–than who I am now. And it confounds me that the person I am now, who is damaged in so many ways, could be loved, or liked, or even tolerated, by anyone else.

December is here, and with it, for me, a sense of depression and isolation. I’m not sure what’s triggered it; there are a lot of good things about December. I love Christmas and all the associated glitz and festivities, although I hate the winter and the snow makes me want to hide myself away. At the end of the month, of course, is my birthday, followed by New Year’s Eve….both things I typically love celebrating. This year, though, I feel old and worn out. I feel like another year has passed without me accomplishing anything significant in my life, without even touching anyone else’s life in a positive way.

I think some of it has to do with the fact that, due to health reasons, I’m not traveling anywhere to see family and friends. I’ve never spent Christmas alone, never…and it’s occurred to me that after a decade here in Atlanta, I don’t have much to show for the time I’ve spent and the life I’ve built. I’m single, in my early 30′s, living in a crappy apartment, dating a guy I can’t ever live with, marry, or even spend holidays with, due to the abusive way in which his family treats me, struggling with my sense of self and need for adventure, broke, uninspired, and over the past six months, fighting illness and anxiety and the pervasive sense of unattractiveness and lack of self-esteem that has accompanied this difficult time. Sometimes, I’m not even certain if I have friends in my life, or just people who tolerate me. Lately, everyone’s tolerance has diminished, as has the frequency of the phone calls and e-mails I receive from those reaching out to me. Typically, my Inbox is filled with invitations and festive plans for the next month; this year, it’s a bit like I’ve been forgotten, omitted from the social calendar. It reminds me a little of the old days when pregnant women were forced to endure “lying-in”, confined to bed-rest and all but forgotten during the third trimester of their pregnancy, able to resume normal life once they were better.

I feel like the world has put me on hold, is planning to call when I get better. I am reminded that I have many more acquaintances than friends, and when you are unable to travel, spend much time being social, or entertain others, it can make for a very lonely existence. I can’t even choose to concentrate on work during this time; for some reason, work has all but dried up, although I’m back to working full-time at my normal job, it’s as if I’m on “probation” again. I believe they hired too many people and don’t have the work to go around. Whatever the reason, the work isn’t there, which inevitably means the money isn’t there. And, because I’m so stressed out about money and am not drawing inspiration from others or having new adventures, the muse that had been inspiring me to pour all my feeling into working on my manuscript has abandoned me. It’s instead been replaced by a voice that tells me nobody cares about me, and the idea of writing a novel is self-indulgent, and one nobody would really care about. Therefore, I haven’t written a word in nearly two weeks.

Even The Guy I Am Currently Dating seems impatient and disenchanted with me. After Thanksgiving, which I spent not with him, but with a friend’s family, throwing our annual Turkey Day gathering (which he did not attend; he’s never once chosen to spend a holiday with me over his mother.), I came home exhausted, to be greeted by an e-mail from someone who was, in effect, terminating our Facebook friendship. He claimed it wasn’t personal, yet I know full well it was; months ago, when I had a disagreement with a dear friend who de-friended me, he told me that anyone de-friending me on FB wasn’t really a friend, and I was better off without them. I don’t see how that logic applies differently here, and needless to say, I was tremendously hurt. I felt abandoned by someone I trusted and opened up to, a particularly hard facet of life for me to deal with peacefully.

This was followed up by a somewhat scathing letter from my roommate, and when I was typing a reply, The Guy I Am Currently Dating became so annoyed that I’d ignored him for 45 minutes to write an e-mail, he put on his coat and hat and said he was leaving. I told him that if he was going to abandon me like everyone else in the world, I wouldn’t be terribly surprised, and if he chose to leave rather than be supportive of the emotional upheaval I was dealing with, he didn’t need to come back. The fact that he stood there for ages considering it…well, I don’t know what to make of that. Finally, I realised I couldn’t emotionally cope with being everyone’s punching bag anymore, and took a handful of anxiety pills and went to sleep. Apparently, The Guy I Am Currently Dating stayed for awhile, but I have no memory of anything that happened between then and waking up the next day.

I feel I’m missing soulmates in my life, people who genuinely understand me, get where I’m coming from, and care about me enough to stick around. I believe in that sort of thing, and I wonder why I’ve never been able to find mine. Perhaps there just aren’t enough people like me out there. Perhaps not everyone has someone who really understands them on a fundamental level. If I do have such a person in my life, it isn’t any of those to whom I’m the closest, or at least, not at this point in my life—which leaves me feeling a little lost. I guess I am not the sort of person to whom others easily relate, and if my experiences in Atlanta are indicative of my life, not the sort of person others are compelled to like, or to get to know on any sort of meaningful level.

As for the health issues, all my tests came back, so I suppose it’s on to the next stage: trying to formulate treatment. My blood work came back indicating I’m deficient in a number of nutrients, so I will be on Iron, Zinc, B-12, Vitamin D, and prescription-strength Vitamin D, in addition to my current Magnesium and cranberry pill. Also, what they previously believed to be fibroids turned out to be a hemorrhagic cyst on my ovary, a condition they believe will “resolve itself”. Frankly, this scares the hell out of me; I’ve always associated the word “hemorrhage” with “something that creates the possibility of you bleeding to death.” For some reason, whenever I think about it, I recall this particularly heart-breaking scene in a movie whose title I cannot remember, one where Demi Moore is a woman in the 1950′s having an illegal abortion, and afterwards, is left alone in her home. The procedure causes her to bleed to death before she can call 911. Needless to say, this diagnosis has caused me an additional dose of anxiety.

I also had the ENG, to test for the cause of my vertigo and potential vestibular disease. It was a very clear positive; the lab tech said she’d be reasonably certain I’m suffering from a perilymph fistula in my left ear. It’s very difficult to differentiate a diagnosis of fistula from the more common, more chronic Meniere’s Disease without actually seeing the hole, but once they’re able to determine that it’s there, surgery is usually necessary to fix that. However, I likely won’t be having anything that dramatic until the early months of 2012…that is, if I can afford it.

All these tests and the accompanying anxiety have left me exhausted, so it’s a relief to have them done with for awhile. I just wish I had more than $5 in my pocket, and less than $50,000 in medical bills, without even having gotten to the part where a doctor fixes the problem. I think then, I might be a little happier.

As it is, it feels like it’s going to be a sad and lonely December for me. The older I get, the more it seems that life, the world, and everyone around me, tends to be marching on without me.

Usually, I get in the bad habit of not posting here because there’s simply little of interest going on in my life. Lately, however, it’s been the opposite. Life has resembled a rollercoaster ride I’d love to get off of, but somehow, seems to start over again before I can run for my life.

I’ve been mysteriously ill for 6 weeks now, ever since my fateful trip to the beach, and the frustrating part is that absolutely nobody has been able to say “Aha! Here’s what’s wrong with you!”. I’ve made 4 emergency room visits, a trip to the cardiologist, the neurologist, and the ear, nose, and throat specialist. I’ve been on no fewer than 8 prescriptions, largely for drugs I didn’t need. And, while the symptoms have improved a bit over the past week or so, I’m certainly not back to my former self. I’ve been diagnosed with everything from anxiety and depression to heart issues to ear infections to vertigo to migraines, but little seems to make a difference.

The scariest moment, by far, happened at 6 AM once morning, when I was forced to call 911. I woke up with half of my face feeling numb, a numbness in the top of my head, and peripheral vision in my right eye gone and replaced with a black shadow. Since they’d diagnosed me earlier in the month with anxiety, due to recurring panic attacks about my health, I quickly took my Wellbutrin for the day and waited to calm down.

Within minutes, I felt a feeling as if something exploded in my head, and my heart was physically beating so fast that the rest of the world disappeared. I couldn’t walk, or get to my phone, and when I did retrieve it, couldn’t remember my name or how to call 911. I started to have a feeling like convulsions were grabbing hold of the back of my spine, and if the ambulance didn’t get there, I was going to die. When they did arrive, my pulse was 188, putting me in the “danger” category for having a stroke.

If I’d gone to a skilled psychiatrist or family doctor and not the ER, this might have been avoided. Reading about Wellbutrin mentioned that patients with a history of being on benzodiazapenes (such as Xanax, Ativan, Valium, Zoloft) should not be on the drug, as well anyone with a history of seizure disorders. Not only is there epilepsy in my family, although I don’t suffer from it, I had a seizure on a sinus medication over a decade ago, and have been treated with both Xanax and Valium in the past for anxiety, insomnia, and PTSD. The ER doctor, to whom I gave this information, put me on Wellbutrin in addition to a beta blocker for my rapid pulse rate and slightly elevated blood pressure.

I was on the drug for two weeks. The first day, I felt wonderful. By the second day, I was sitting in the dark for three hours a day, crying because nobody would help me, and threatening to kill myself. By the end of the 5th day, I’d begun getting intolerable migraines. Around day 10, my vision was blurred, and I hadn’t slept for nearly two weeks without waking up once per hour.

I’m no stranger to anxiety and panic attacks, which is the problem I originally needed help managing, amongst other things. However, I’ve never been on a long-term anti-depressant (although many have suggested perhaps I should have), and never in my life have I experienced some of the strange things that went on with my body and mind while taking Wellbutrin. I literally felt as if I were losing my mind, and seriously considered checking myself in to a psychiatric hospital for my own safety..

After the stroke-like symptoms, doctors went into overdrive trying to find out what had caused my initial symptoms 6 weeks ago, and why things were getting so much worse. I had many EKGs, an MRI, a CT scan, and what seems like every possible test they can do on your blood to rule out diseases, metabolic disorders, and tumors that might be hiding. I was screened closely for MS, for thyroid dysfunction, for hereditary heart problems. Everything was negative, and other than my uncontrollable anxiety level and unexplained high blood pressure/heart rate, nothing could explain what was going on with me.

The doctor immediately removed me from Wellbutrin, and put me on Valium for anxiety. The first few days were rough. I’ve never had to “detox” from drugs or alcohol before, but I can only imagine it’s a bit of the same hell addicts go through. I couldn’t stand light, to be touched, and constantly felt lightheaded and as if my head would explode. At night, I’d sleep for 10 minutes before being jolted awake by a feeling of electricity zapping my brain, leaving the room spinning and my vision blurred. It was simply awful, and on top of it, being scared you’re going crazy or going to die because nobody knows what’s wrong with you, just turns your life upside down.

However, each day, I seemed to improve. By day 4 or 5 without the Wellbutrin, I was sleeping like someone who’d not been allowed to sleep for weeks. I stopped being afraid I’d die everytime I closed my eyes. I stopped crying for no reason and writing goodbye notes to my loved ones.

As for the original symptoms, a visit to the ENT was the most helpful. I’ve always had chronic sinus problems, which I’d manage with the use of pills like Benadryl and over-the-counter nasal spray (Afrin.) The doctor explained these things were basically like being on speed for the long-term, and could cause elevated blood pressure and heart rate. I’d been on two courses of antibiotics for an ear infection, but the ENT seemed to think I’d never even had one to begin with. He did something magical where he pressed above my ears and told me to yawn at the same time. There was an uncomfortable “pop”, and since then, I’ve gone from being dizzy 24 hours a day to having two dizzy spells in a week. I’ve been able to work without my sunglasses, and go out with my friends.

What I learned from this is the truth behind all of those who go on and on about how drugs for depression, anxiety, ADD, and other mood disorders are over-prescribed. Whatever your problems are, it’s far cheaper to hand out Prozac or Ritalin than to perform tests to find a physical cause. For those with both physical ailments and emotional issues—no matter how many times you tell them you’re only anxious because of the scary stuff that goes on with your body, doctors don’t care to listen once they believe you’re in the “Depression And Anxiety” category—it’s almost like playing Russian Roulette with drugs until something seems to work.

I have my good days and my bad, like most people. I’m highly-strung, emotional, and more sensitive than most. I probably could use a Valium or Xanax to deal with stress and anxiety now and then. But, what I’ve learned from all this is that I’ll live with myself, just as I am. I’ll cope in a way that doesn’t involve messing with my seratonin, dopamine, or adrenaline…and the next time anyone suggests I should be on long-term medication for depression or anxiety, I’ll certainly not forget this experience…and run the other way.

A bit of my former enthusiasm for all my “projects” has dissipated lately, as is obvious in that this blog has been neglected for the past few days. As I told The Guy I Am Currently Dating, the last time I blogged was very possibly the last time I had an interesting thought.

I dislike January immensely, and February is only minutely better. Without fail, this time of the year is one where I sleep 8-9 hours a night, decide there’s absolutely no reason not to eat the junk food I love, refuse to go outside unless there’s a particularly good reason, and even when I interact with other people, become acutely aware that I’ve absolutely nothing of substance to add to the conversation.

Around this time each year, I become bored, depressed, and a catch a frightening glimpse ahead at the person I might expect to be when I’m 80. Not only do I become bored with everyone around me, all the things I spend my time doing (and often really love), and with the direction my life is heading, I become immensely bored with myself. I start thinking about all the ways I could make dramatic changes, become a different person, living in a different place, perhaps with a different kind of life. All my goals, and plans, and things I looked forward to on January 1st have been replaced with an intense satisfaction and desire to just pick up and go.

Of course, I never do, because it’s way too cold. I can’t even handle the temperatures well enough to motivate myself to go across the street, much less make life-altering choices or embark upon a new adventure.

I’m thinking maybe hibernation is the answer for me. I know once it’s March and I can finally leave the house again without shivering beneath 20 extra pounds of sweaters, coats, scarves, hats, and gloves, things are going to be OK. But, in the meanwhile, Winter is fairly difficult for me to overcome. Even my skin wants to be hidden, as it’s sprouted icky dry patches resistant to lotion or moisturizer of any kind.

It’s hard to feel sexy in January. In fact, it’s pretty difficult just to feel human sometimes.

Thank goodness for my electric blanket. It doesn’t conquer boredom, but at least I can remain healthy while being restless and dreaming of running away to a fun, lively place where everyone wears sandals 11 months out of the year.