I have been quite disappointed in myself, after making the commitment to do the A To Z challenge, that I was unable to keep up with it this week. It is particularly disappointing because I’ve already blogged about my tendency not to complete things and to be hard on myself when I do not succeed at things.

However, all of Monday had gone by in a blur, and at the end of everything, I was upset because the day disappeared and I hadn’t blogged. Then it was Tuesday, usually the busiest day of the week in my world, and I still had not blogged.

E is also for Easter, which was Sunday and a relaxing day. Easter happened to be overflowing with TV shows I wanted to see, and I also tried my hand at another “E” thing, eating. *laughs* In particular, I made soup in the Crock-Pot, which turned out better than I expected—specifically considering I don’t really know how to cook, but I use recipes as guidelines rather than instruction manuals. I think I ate about 8 bowls of soup over a three day period, before I decided I was souped out (note to self: cut recipes in half. Also, rice is bigger after it’s cooked for a while.) After successfully making the soup, I watched the Smurf movie, which was pretty smurfing cute!! 😛 I don’t really love animated movies; I only usually see them if they are something fantastic, and “cute” isn’t usually my cup of tea. But the movie was entertaining, surprisingly witty, and had a great cast.

E is also for Energy, and I had been in better spirits and having more of it. So, as happens every time I’m feeling positive, I decided to try to cut back on my beta-blocker. Although doctors like to deny it because they are so widely prescribed, many reputable studies and also personal observations have shown me that beta-blockers severely slow down your energy level, cause weight gain, bloating, and in some people, diabetes. However, for people like me who have a high pulse and an irregular heartbeat, it is one of the only effective treatments and significantly lowers your risk for heart attack or stroke. Since my mother started having both in her 50’s, both my brother and I were put on beta-blockers at the first sign of “something’s wrong”. During my trip to the ER after the episode recounted in “B Is For Beach”, the doctors found I had PAT: Paroxysmal Atrial Tachycardia. My heart rate will randomly speed up, trigger heart palpitations and panic attacks. It is not entirely uncommon and not life-threatening, but an episode will keep you in bed or send you to the ER– and the beta blocker put an end to them almost completely. However, the side effects are terrible, even after 4 years.

Worse yet, my doctor denies things like the beta-blocker being responsible for weight gain and fluid retention (even though it has happened to almost everyone I know who takes them. Recently, a friend was put on them, and his doctor immediately put him on a low-carb diet before the pills even took effect.), and also does not understand why I cannot seem to cut back the dosage of this medication. I have tried multiple times, but after doing extensive research on the internet, learned that “rebound symptoms” were common. Cut back on your medication, symptoms of whatever made you take it to begin with return. I’ve never gotten past 4 days of even a small reduction, and my doctor gave me the OK to cut my dose in half. When my blood pressure started to read 92/58, I got scared, and decided it was time to try again.

Today is day 4, and the side effects have been terrible. I feel sad and just want to lie in bed all day, and the smallest thing going wrong makes me want to bury myself in a hole and never come out. My hands shake, and one night, felt so dry and swollen I couldn’t move them. I had a heart palpitation, my BP is up (it’s actually normal, which to me feels like I am riding a rollercoaster), and I generally feel scared. Still, I’ve done everything I can to stick to taking that little piece of pill away every day. It made me feel comforted to know at the same time, another friend has been struggling to cut back on his terrible smoking habit, and his symptoms and struggles aren’t much different. I try to remind myself that if I keep focused on the goal and don’t panic, I can do this thing that will help in the long run. But it is hard on my mind, my body, and my emotions.

I almost quite trying on Monday evening, when E was for Emergency. I had a text from my brother saying my dad was in hospital again. One of the things that scares me about my own health is how unhealthy my own parents are, in their mid-60’s. My dad has stage IV prostate cancer that’s spread to the bones, and is currently doing chemotherapy and injections to shrink the tumours. He also suffers from Lymphedema, is over 500 pounds, and has been confined to a bed and wheelchair for about 6 years. One of the side effects is an inability to get enough oxygen into his body, and although he has a machine to help with this, he doesn’t use it. So, when trying to get into his wheelchair, he fell, and the doctors discovered his carbon dioxide level was at 95%. He is currently in a medically induced coma while they get his body balanced. It is perhaps the third time this has happened. Yet, my dad refuses to go to a nursing home where trained professionals can give him 24/7 care. It is a very tough situation, and it upsets me that my own health issues keep me from being able to travel to see my family.

I try not to beat myself up for forgetting to blog in the midst of all this, and my body struggling with itself to even do simple tasks—but it does feel a lot like “F”, which is failure.

At this point in my life, I need a win. I need something to go right. I need to do something I didn’t screw up along the way. I need to fight for every day to be a good one, even if my quality of life isn’t what it used to be and may never be the same again. It’s too easy to give up hope and not find anything to smile about when you wake up in the morning, when everyone should be smiling just because they woke up in the morning. There is so much in life I don’t have the means, ability, or knowledge to control, making sure that there are little successes where I can find them is important to me–even if it just means writing on this blog every day.

I may only be able to live a “C” kind of life these days, but it’s way better than an “F” kind of life.

Before I start today’s blog, which is about my love of the beach, a quick note about yesterday’s. The Guy I Am Currently Dating shared my link with Amanda Palmer’s Twitter account, and it was retweeted!! It was really awesome to see people come to visit this page because I talked about the book and how it aligned with my personal beliefs and experiences.

Today’s blog is a more personal one, one that is about past experiences, but is largely about daydreams…and how what you want most in the world isn’t always what you thought when you were 5 or 10 years younger.

We all have daydreams, and for me, a lot of them involve being somewhere other than where I am now. When I imagine where I might want to be at any given time, I usually think of the beach. Often, it’s a beach I’ve been to in the past, but sometimes, it’s an entirely new place my mind has invented. It’s strange that I like the beach, because for as long as I can remember, I’ve had trouble doing “nothing” and that is largely what people go to the beach to do. Ever since childhood, my family would be relaxing, and after 10 minutes of quiet, I’d ask “What are we going to do next?”

I have always been a city girl. I like bars, restaurants, things to do, people to meet, adventures to have. But there is also this feeling you get when you lie on the sand and look up at the sky, or take off your shoes and walk near the ocean at midnight, that the world is so big with possibility and you are so small that it would take you 100 lifetimes to do, to be, to see everything. It makes all your problems seem insignificant, or at least small enough to handle.

Even as adults, my family, and eventually just my brother and myself, would take a trip to the Jersey Shore. It’s not the Jersey Shore you see on MTV, although there are bars and restaurants and a club or two. But there’s also the fudge I loved half a lifetime ago, getting a henna tattoo on the boardwalk and playing games for stuffed animals like I’m still a teenager, riding the tram car up and down the boardwalk, stopping at a 1950’s Doo-Wop place for a milkshake and getting a slice of some of the best pizza on Earth. It is a place I love, and one of the saddest things about getting sick is that I’ve been unable to go back.

Of course, the last trip to the Jersey Shore is what made me sick. I was happy, healthy, energetic…and one day, I mixed an orange Izze with some vodka, sipped it on the beach while listening to music, and fell asleep. I woke up sunburnt, but had no idea how badly. I took a shower, walked around for a few hours, and by the end of the night, I could barely crawl home due to blisters on my legs. But I made it, and the next day, my luggage and I had to make it all the way to the bus. Later that night, it wasn’t a pretty picture. I had my first panic attack, which felt suspiciously like a heart attack, and afterwards, kept shaking uncontrollably. I thought I was going to die. Instead, I rested for a few days and traveled back to Atlanta, with 2nd degree burns over half of my body.

My parents said “Don’t go to the hospital”. “It’s sunburn”. “It’s no big thing”, so I believed in my tendency to make a bigger deal over things that need be. It took 2 weeks before I ended up in the ER, leaving an event early and crying because I was sure I was going to die and never see anyone again.

The ER rehydrated me, noticed my resting pulse of 120 was not good, put me on sedatives and beta-blockers, and sent me home. But it didn’t take long before the panic attacks started again, and the constant dizziness. 4 visits to the ER, a drug that tried to kill me, and weeks later, there was still no diagnosis. One doctor put me on a heart medication that still to this day causes weight gain. Another determined it was an inner ear disorder. Another said I had an anxiety disorder, another said I had late onset bi-polar disorder. At one point, I had to stop the doctor merry-go-round, because the motion of the car would trigger adrenaline rushes so bad I would rationally consider jumping out of a moving car on the highway to make it stop.

Nobody knows what is wrong with me, or what happened that day on the beach to trigger it. One doctor even said I had brain damage to my hypothalamus as a result of heat stroke. But that one day changed my life forever, and I can’t help but think, “If only I’d stayed in and worked”, and “If only I’d waited until dinner to have a drink”. I hope one day they do find out, and I hope I’m alive when they do. But I don’t count on it. Being sick has become a new normal, and being alone isn’t as lonely as it was when I was healthy.

So, you’d think I’d be terrified of that beach. You’d think I’d have a panic attack just remembering the place where this happened. Instead, I think “If there is every a way for them to identify and cure my mystery illness, and I can go back to being me, I’m going to the beach for a month”.

I don’t care if I’m 40. I’m still getting a henna tattoo and going to the fortune teller and eating too much fudge on the tram car. It turns out that even one of the worst experiences of your life can’t cancel out years of great ones.

It can teach you, though, the value of small things…and being healthy enough to walk on that beach at midnight again is priceless in my world. It is priceless enough for a small town of 10,000 people to seem more interesting than cities with ten of millions, because the things that remind you of when you were younger, happier, and healthier are what you remember when you journey throughout life….even if you’re drinking apple martinis and covered in glitter.

You may have noticed that this blog hasn’t been doing its normal thing lately or following a schedule.

The past week and a half have been really, really tough on me, both from a mental and physical perspective. I wonder why it is that the best times in your life are weeks that seem like a day, but the worst times are days that seem like months?

The beta-blocker withdrawals have not been going well. The doctor wanted me to cut back my medication from 25mg to 12.5 mg. Since it’s one of those drugs from which you’re supposed to step down gradually, I spent a week in bed while I slowly reduced the amount I took every day. Somewhere in the middle, I felt a little better, and got close to the 12.5 mark. Then, I hosted an event I had on the schedule for a number of weeks (before knowing I was going to need to deal with this.) My pulse was up over 100, my BP jumped a full 20 points, I couldn’t stop sweating, and started to see stars. I started to think again about how there is something wrong with my body, something that no doctor has discovered, but this beta-blocker seems to treat. Without it, my heart palpitations and irregular heartbeat have returned, and a feeling of adrenaline that seems to rise up throughout my body whenever I’m in the car makes it tough to go anywhere. My migraines have returned. And, for the first time in well over a year, I had a full-on panic attack, the kind where I feel as if I’m not in control of body or mind, and I’m certain I’m going to die, and nobody can help me.

If there’s something that’s a cross between having the flu, a heart attack, and menopause at the same time, that’s what I’ve been feeling. It’s tough to remember that 10 days ago I was practically skipping to the doctor’s office, saying “I feel great!”.

It makes me a little sad to realise I am not cured, I’ve just been on a drug that masks the symptoms of whatever is wrong with me. And whatever is wrong with me isn’t just sheer anxiety; I feel it in my body, and see it in how my body reacts. I experience the same symptoms that sent me to the ER to start with, and it makes me feel as if I went through two years of hell and gained 30 pounds for no reason. I can’t just stay on this medication forever. But I can’t get off of it until they figure out what causes my pulse to race, my inability to tolerate warm temperatures, and the feeling like bursts of adrenaline are exploding all over my body, and why I have an irregular heartbeat. I’ve had so many tests done that I have to conclude it’s something no one can see, and something that’s somehow regulated by a relatively low dose of a beta-blocker.

Drugs are not cures, though. This particular drug is used to treat almost anything that requires your system to slow down to get better. A slowed-down system means you sleep more. You gain weight. You retain water. You lack energy. This particular drug is notorious for being difficult to withdraw from, even if you’re healthy enough to do so, and doctors often don’t know what’s a withdrawal symptom and what’s a symptom of illness they put you on the drug for in the first place. If you don’t have insurance, as I don’t, nobody cares much one way or the other. The drug is linked to Type-2 diabetes and blood sugar instability. There are tons of message boards with people sharing their stories about the drug, and for the most part, everyone’s doctor says “Side effects should be minimal.”

I wanted off the pill because I was tired of not being able to lose weight. The doctor gave the OK to adjust because my blood pressure was actually very low. Problem is, I wasn’t put on the pill for high BP. I was put on it because my pulse races and my heart was having palpitations and skipping beats. But, all the symptoms that made it impossible for me to function like a normal human being disappeared when I took the full dose. When you’re sitting in the hallway, hiding from your friends at a bar, with your heart pounding out of your chest and feeling like you might die, I can tell you, the last thing you care about is “Nobody will ever find me attractive again because I’m so fat.” You’d be willing to weigh 300 pounds for the rest of your life if it meant you could be healthy and live like a young, energetic person. However, it’s a vicious cycle, because once your health improves, you feel horrible about weighing 300 pounds.

I don’t know what happened to me, but I’m terribly depressed about it. I don’t often talk about my family on here, because they aren’t much a part of my life, but my mother has had numerous strokes and heart attacks. She’s deteriorated to the point where she can’t leave the house or string together coherent sentences. The only things that make her happy seem to be talking about things she used to love and will probably never be able to do, which is so sad, because I feel that way about my own situation sometimes. The doctors say that my mother has the mental presence and body of an 85-year-old woman. People in my family are talking about legal papers and wills and preparations for “What if she doesn’t have another few years?”. My mother is 62 years old.

My father, whom I’d largely not rather see or know at all, is 63. He’s of perfectly sound mind, if that means being as abusive as ever to everyone around him is a sign you’re a rational adult. However, after two failed knee replacements and a diagnosis of lymphedema, he’s confined to a wheelchair. He’ll probably live another 20 years, although he doesn’t want to. At his largest, my father was about 530 pounds.

I was 30 when I mysteriously got ill, and accumulated $50,000 worth of debt and endless months of anxiety trying to figure out what’s wrong with me. I saw 13 doctors, most of them specialists. They took so much blood for tests they weren’t legally able to draw any more for another 6 months. The cardiologist, whom I think should have been interested in my case, dismissed me and said, basically, “You have anxiety and you’re wasting my time.”

I clearly have anxiety as a result of this situation. I clearly had damage to my inner ear. But none of that explains the other symptoms; the extremely rapid pulse rate, the inability to be around hot or cold temperatures, the adrenaline rushes, the panic attacks prompted by a physical feeling in my body of being totally out of control. I am certainly mentally unhinged by all of this. But what doctors don’t understand is that I was normal—until physically, I wasn’t. And when I scale back my drugs, it’s the physical, not the emotional, symptoms that render me unable to function.

There is, and has been, something wrong with me for a very long time. If I had money, I suspect I’d have been put in a hospital and gotten the best treatment possible. Because I don’t, I’m told I’m fine, given some pills, and sent on my way.

I often joke that I want my tombstone to read, “Nobody would listen.”. It’s not really a joke.

I don’t want to be a casualty of the system, someone who didn’t have to lose 5 years of life—or end up meeting an early death—because all the doctors were confused and scratching their heads. And when doctors don’t know, they tend to tell you that it’s simply anxiety or depression. It’s a safe bet, because 2/3rds of the country has some form of anxiety or depression, and it’s better than “We just don’t understand what’s going on with you.”. Meanwhile, it’s hard to explain your anxiety stems from an intuitive voice that something is physically wrong with you, and the doctors never looked in the right place or did the right tests. The idea that your mystery affliction may one day kill you, and has totally changed your life in the process, will cause *anyone* to have anxiety or depression.

I feel like someone who’s falling through the cracks, because I don’t have money or insurance or the resources that inspire doctors to care. I feel like a decent cardiologist should have set me up with a holter monitor and done a stress test, rather than doing an Echo and telling me my heart had no physical abnormalities. Even I know that irregular heartbeat and palpitations aren’t often caused by visible physical abnormalities. I feel like perhaps an endocrinologist should have been wondering if I have a hormone imbalance causing these things, because why does a previously healthy woman in her 30′s show symptoms that are frequently associated with menopause? I can figure these things out using logic and a basic understanding of human anatomy. If I can, why in the world don’t the doctors?

The thing with “rare problems” that “nobody has” is that at some point, someone somewhere has them. And if they’re told they’re just anxious or need to see a psychiatrist, well, that’s not a productive solution to a physical problem.

I am actually a very smart person. I may be highly-strung, but I’m also highly intuitive. And for so many years, I’ve felt like something is destroying my life and nobody will listen.

There’s nothing more frustrating than that, so if I went to see a psychiatrist, I’d probably point that out. I bet I wouldn’t get one step closer toward solving an actual problem, though.

People don’t listen. It takes too much time, too much energy, and being a doctor is largely about volume and high turnover and writing prescriptions for commonly used drugs. It isn’t about spending time with one person and actually figuring out why something in her body stopped working correctly. But, it should be….because I want to live to see 35, and even 40.

So often, people mistake being in tune with your body and scared by what it’s telling you with being a hypochrondriac. They are not the same thing. One day, someone is going to find out, and I hope it’s not too late for me by that point.

And I hope I’m not completely alone in the world when that happens. :(

Sometimes, the things that you miss most in your life aren’t the big, life-changing, extraordinary things that happen to you. They’re the small things, things you didn’t even pay much attention until they happened to be taken away from you. They’re being able to look great in a dress you love, to walk three miles like it’s no big deal, to have a martini at 5 PM on a rooftop just because, to meet someone new who makes you feel excited about life all over again.

The other day, I happened to get a notice that all my photos from the old Kodak Gallery site were being transferred to Shutterfly. Since I stopped using Kodak in 2006 when they deleted 7 years of memories because I didn’t click on a link in an e-mail I’d never even seen, I was surprised. I was also curious to look back at the old photos that somehow made it back to me.

Some of them were taken just two or three years ago, reminding me how much life can change, so very quickly. Others were taken when I was 24 or 25, reminding me of a person I used to be, a person I’m not even sure I recognise.

I’ve always been so hard on myself. I remember looking at those exact same photos when I was 7 years younger, 30 pounds lighter, and thinking I was the most unattractive person on Earth. I was convinced I was fat, ugly, and nobody would ever love me, or even like me, because of it. Now, I see a young, vibrant, thin, attractive girl in those photos, and I can’t remember why I felt so insecure in my own body, why I felt so constantly judged—and I was, but not for the reasons I imagined—, and why I let those insecurities hold me back from seizing opportunities.

Why didn’t I ever feel good enough? Why did I not take chances because in my heart of hearts, I knew I wasn’t special enough?

I would kill to have that 25 year-old body back now. When I look in the mirror, I’m filled with the same sense of self-loathing, the hatred of the toll that illness has taken on my body, my self-esteem, my sense of possibility. Only now, the reasons for what I feel are real. I’m not the person I used to be, the person I could and should be, and I don’t know how to get to the point where I’m a person who is happy being exactly who she is, where she is, doing what she loves in life.

I used to wake up in the morning, even in my darkest of days, believing anything was possible. “Today is the day I’m going to have an adventure”, “Today’s the day I’m going to travel”, “Today’s the day I’m going to take a chance”, “Today’s the day I’m going to fall in love.” I didn’t have a lot of the practical skills one needs to succeed in life, I didn’t have focus or ambition, I didn’t have much faith in myself or sense of self-worth, but I did somehow believe that my life was destined to be a great adventure. More importantly, I had the energy and the no-obligations, devil-may-care mindset to take the chances that would make my life a great adventure.

I was always hard on myself, because I wasn’t born looking like a supermodel, I didn’t have clear career goals and plans and aspirations, I was the kind of person that people talked about behind my back just for being myself, and it hurt. It amazes me, because I see a very young, very attractive person who had a lot of opportunities and didn’t take advantage of them.

I think the thing that hurts the most is seeing someone who was healthy, energetic, attractive, personable, and intelligent avoid following dreams and taking a conventional path because she was afraid of failure and rejection.

I would give absolutely anything to feel that free and vibrant again. Some days, I can’t leave the house without feeling inexplicably dizzy and wondering if I’m going to die. The person who used to fly around the world on a whim with nothing but a backpack is a mystery to me. I miss her, terribly.

I’m no longer young, or attractive, or thin, or healthy. I no longer wake up in the morning believing in possibilities, or that today is the day something awesome is going to happen to me. It’s sad in a way, because I’m far too young to have lost so much in the way of hope and enthusiasm and energy and self-love. The thing is, my life has been an adventure, but it’s been a hard road. Maybe some people are candles that burn brightly for a little while, and then simply hang on, unnoticed, hoping for the best.

Life can change in an instant. A year ago, I was wearing a bikini on the beach, walking 5 miles a day, appreciating the strangers that honked their horns at me when I walked by. A week later, I was having convulsions, feeling my heart stop in my chest, and starting a 6 month journey of seeing specialist after specialist, only to get no clear answers. “It’s all anxiety”, or “You have an inner ear disorder”, or “You have high blood pressure” were all common diagnoses, and I’ve been able to function on a handful of pills each day. Yet, all of the sudden, my body can’t control its temperature, I feel like I can’t breathe when too many people are around, and every time I have a dizzy spell, I can’t help but be reminded that my intuition knows there is something in my body that is ruining my life, and one day, it’s going to kill me.

I’m still vain enough that the extra 30 pounds I put on due to heart medication makes me cry when I see myself, and that my body is a literal road map of scars is enough to convince me to check myself into a nunnery. I’m still vibrant enough on the inside to want adventures my body can’t handle. Mostly, I’m not strong enough that I don’t feel sorry for myself from time to time, wondering what happened to me, and screaming inside that it isn’t fair. I was supposed to have a lot more time left to be the person I wanted to be.

Life isn’t fair. And one day, maybe soon, it will come to an end. I imagine that death, too, is this single moment that changes everything, that you didn’t see coming.

Pictures make me sad, because I remember being 25, and living independently and how awesome that felt. I remember being 21 and moving to a place I’d never even seen because I believed in the possibility that my soulmate was this person I barely knew. I remember being 17 and graduating from high school, and not feeling the slightest bit of sadness or regret at moving on, just being excited about the future. I remember being 13, and the biggest concern in life was what to wear to the Friday night dance or whether a cute boy who said he’d call me actually would. I remember being 8, and decorating the Christmas tree and baking cookies. I remember being 4, and sitting next to a quirky, introverted boy in pre-kindergarten, one with a far brighter future than mine, who passed away nearly a decade ago.

I sometimes feel like life is over, because it’s this adventure in which I’m no longer strong enough to participate. I’m just another struggling, middle-aged, anonymous person without any special talents or any remarkable qualities, and I would give anything to go back to a time where that wasn’t the case. I can’t imagine anyone seeing anything special or attractive or of value in me anymore; I’m more like the tattered Velveteen Rabbit waiting to become real.

People say they never say this when they get older, because they know better, but I’d give anything to do it all over again. Even if it were exactly the same, even if it were just as hard, just as painful. It would be better than the concept of living in a world where anything and everything isn’t possible, because your own body says so.

Sometimes, I spend time hoping I make it to 35, 40, 50. Other times, I wonder why, because I don’t know if I’ll ever have the quality of life that makes life the adventure I need it to be in order to feel fulfilled. I wonder if the best days of my life are behind me, and I wasn’t even aware they happened.

I don’t do well with change. But what terrifies me is how easily change is forced upon you, how it can all be taken from you in a second. And, in comparison to the lives many lead, I’m one of the lucky ones.

I would do it all over again, just to remember what it feels like to wake up with this restless energy in my heart, and think “Today’s the kind of day I’m going to remember for the rest of my life.” For the past year or so, I wake up thinking today is going to be like every other day, or simply utterly shocked that I woke up at all.

Whenever I see really young people, I want to remind them to take every opportunity that ever comes knocking at the door. It doesn’t always come back, and after awhile, you realise that you only have a short window of opportunity where you’re young, healthy, vibrant, attractive, energetic enough to make “anything is possible” a reality. One day, someone will press the pause button on your adventure, and nothing will ever be the same.

I spent so much time in my life being restless, I never knew how much I’d look back on and miss. I thought being bored was the worst thing in the world. It wasn’t. I thought being alone meant I was the only one in the world who was, at the core, totally unloveable, and independence was just a sad way of hiding the fact that you were alone in the world. It didn’t.

There’s a song I used to sing at auditions; for a year or so, my standard 16 or 32 bars came from a piece from the musical “Ragtime”. The final line of the song is “We can never go back to before”.

It turns out, the most painful lesson life has ever taught me is that the line is absolutely true. There are no do-overs.

You may have noticed that I’ve been strangely MIA from this blog for awhile. There are a lot of reasons I could give, from trying to work out feelings and relationship issues with people in my life, to having work to do, to feeling absolutely uninspired to do anything because I am now permitted to watch 7 hours of TV each night, thanks to the simultaneous airing of the Olympics, Big Brother 14, and Showtime’s Big Brother After Dark.

The real reason is, however, that I simply have blogger’s block. It’s a condition similar to writer’s block, only it’s one where you realise you have nothing interesting to blog about because it’s been ages since something interesting happened to you. I find myself struggling to hold up my end of the conversation in talks with even my closest friends, and if you ask any of them, you’ll hear testimony about my innate ability to have 6-hour phone calls or sit at a bar talking until it closes down at 3 AM. Therefore, my sudden realisation that I have nothing to discuss really frightens me.

“OMG!!!! I have become old and boring! When did this happen? Do I still have friends? Will anyone ever be attracted to me ever again? HELP!!!”

Yeah, it goes something like that. You see, I’ve always relied on my sparkling wit, snarky conversational skills, flirtatious banter, and penchant for not shutting up to carry me far in life. I am very ill-equipped to be an introvert. I am even more ill-equipped to be an introvert with a blog.

This exile from life is largely self-imposed. I really do have work to be done, and I really do love the Olympics and Big Brother. I’ve also spent a lot of my free time working on promoting and completing my first book of poetry, Ophelia’s Wayward Muse, for which I’m fundraising on Kickstarter.

“OMG! Why was I so ambitious in thinking people would care about this? I only have 9 days left to raise $175, and people aren’t donating! Is it because my writing sucks? Is it because I don’t have any friends? WHYYYYY? HELP!!”

Yeah, it’s kind of something like that. (But seriously, if you read this blog on a regular basis, you should donate. It either means you’re my friend, or what I write doesn’t suck, and I need the validation…in the form of monetary donations. It will allow me to publish something offline for which I will request more validation. Please keep enabling me. It makes my day. ;P)

The summer is the main reason for my self-imposed exile. It was only a year ago that I was paying regular visits to doctors, hospitals, and emergency rooms, and preoccupied with the idea that I was not going to live to see 2012. Obviously, I am still here (which actually caused me to lose a bet with a friend. Yes, I have the kind of friends willing to bet on the likelihood of my impending death. I totally think that’s awesome.), although there’s about 25 pounds more of me. In a way, that’s a kind of, sort of death, when you can no longer fit into your favourite outfits because you need to take pills that make you fat, sleepy, and hungry. It turns out, the doctors disagree with me. They call this a “minor side effect” and tell me my “symptoms are responding well to medication”.

One thing they can’t treat, though, is the effect that last year’s heat exhaustion/sunburn/massive infection/dehydration/malnutrition episode had on the part of my body that regulates my temperature. I’ve always had a hard time with that, being the kind of person who felt perfectly comfortable in 110 degree heat until I suddenly passed out. If I get caught in the rain, I’m freezing, and need to take a hot shower, and then have an evening of flu-like symptoms. My hypothalamus and I have never been good friends. However, being sick has taken things to a new level.

Of course, summer in Atlanta means every day brings a balmy 93-degree day (which feels like 97 degrees.) Even when I venture out to air-conditioned places, I find myself feeling overheated and dizzy. Touching my arm will reveal you can fry an egg on it. I decimate ice cubes on contact. Summer and I used to get along very well, but we have officially broken up. I’m considering relocating to Seattle, or SoCal.

I should be thankful. This summer is not one of hospital visits, panic attacks, and unpleasant tests. Medical professionals seem to think I am getting better, even if I don’t always feel that way. “Taking it easy because it’s too hot outside for my body to handle” shouldn’t be the worst thing in the world.

Yet, it makes me feel like someone who isn’t me. I have no interesting stories to relate, no drama to entertain me, and no silly pictures for Facebook. I haven’t been to the eyebrow waxing lady in 6 weeks, and the results are sad. Living vicariously through those around me helps, but those around me have been either stressed-out, sick, or both lately, and I’d like to hide from that a bit.

Basically, I can’t wait until the fall arrives. I’m hoping to be well enough to travel, to go out with friends, and to get back to feeling like my old self again. In the meantime, I’m just making the most of my downtime. :)

Today, I’m going to take the time to address some questions that people have sent to me, or have come to my page looking for advice about, regarding medications and illness. If this doesn’t apply to you, just skip. :)

Because I’ve blogged about my medical journey pretty extensively, I get people who end up on this page looking for information on the drugs that have aided in my recovery, Atenolol (Tenormin) and Diazepam (Valium). I’m on Atenolol because since getting sick, I’ve developed an abnormally high pulse rate, and also suffer migraines with aura. (I have always had headaches. I just blamed them on sinus troubles and allergies, which I don’t have. Turns out, I have migraines. Fortunately, they are not as severe as some suffer from.) I’m on Valium because I suffer from a vestibular disorder that causes vertigo, light sensitivity, and migraines. These things also cause anxiety and panic attacks. I was also prescribed Klonopin to take during panic attacks. Since discovering that my panic attacks were related to hypoglycemia (low blood sugar is a side effect of beta-blockers) or an impending “migraine with aura” attack (which last about 20-30 minutes for me), I have learned to manage my symptoms without using the Klonopin…so, I’ve gone about 8 months without a severe, full-on panic attack where I had to be medicated.

For those who come here asking about Atenolol and Valium, and “do they work”, my personal experience is yes. They do. Valium isn’t a good drug for everyone; some people find it highly addictive and within a year, are increasing their doses outrageously. I’m on a relatively low “maintenance” dose of 7.5 mg a day, and only take an extra quarter tablet when symptoms of vertigo or panic arise. Other drugs, such as Xanax and Klonopin treat anxiety, but do not treat vertigo, migraines, or other neurological symptoms. I’ve had bad experiences taking these, and other treatments for vestibular disorder and migraine have had no effect on me. People ask if Valium makes you eat more, or causes you to lose your appetite. It actually does neither for me.

Atenolol is a different story. It’s a tough drug to acclimate to, and I know at least 3 people who needed to get off of it fairly quickly because of the side effects. A common question seems to center around Atenolol and weight, and whether what someone is experiencing is normal.

In my experience, unfortunately, yes. I gained a fifth of my body weight in a year while on Atenolol. Most of that was in the first 3 months of using it. It took that long to realise that the medication was screwing around with my blood sugar, causing me to be hungry all the time, and to eat food I wouldn’t normally eat. On top of it, Atenolol is designed to cut down your cardiac load, so your metabolism slows and you don’t burn calories. When you first start the medication, you’ll feel like sleeping 10 hours a night and your doctor will tell you no cardio. Once you adjust, you will be able to exercise again, and will likely be advised to eat a certain kind of diet, depending on why you went on the drug in the first place. (usually it’s a low-carb, low-salt diet for high blood pressure sufferers. My doctor recommended a low-glycemic diet for me, since I don’t have a history of blood pressure issues.) Some people continue to gain weight no matter what on Atenolol. I have a friend who gained over 70 pounds. This is true of many beta-blockers, alpha-blockers, and calcium-channel blockers. If you keep gaining after the first 8 weeks, see about switching medications. Do NOT abruptly stop taking your beta-blocker, replace it with an anxiety pill, or even decide to cut it in half. Withdrawals are not only hard on you, they can be life-threatening. I speak from personal experience. I didn’t like the weight issue, so stopped taking the Atenolol after 6 months of positive results from it. I actually noticed my blood pressure drop, so thought this was an awesome choice. 4 days later, I almost fell down the stairs because the world went fuzzy and black on me. You’d better believe I took the beta-blocker immediately. Not only was my blood sugar dangerously low from withdrawals, so was my blood pressure. If you decide to quit your beta-blocker, your doctor recommends what amounts to a 12-week slow detox.

After that episode, I decided to stick with the drug. I went from 10 migraines with aura a month and unpleasant panic attacks to 5, and then one month, I noticed I didn’t have any at all. I noticed that cutting calories and trying to be as “normal’ as possible put a halt to the weight gain. When I pig out on foods loaded with carbs and salt, the scale will go up 5 pounds overnight. You can’t do this. People on beta-blockers should aim for a low-carb, protein-rich diet, and eat 5 small meals a day to maintain blood sugar. I have caffeine sometimes. I have chocolate. But I have them in smaller amounts, and see no negative results. (Note: I have not been able to tolerate coffee or espresso since starting this medication. Heart palpitations resulted.) I no longer suffer from agoraphobia because I’m afraid of having a panic attack in public.

People ask me whether or not they should lower their calorie intake to 1000 or 800 calories because they’ve been put on this drug and can’t burn calories like they should. Your doctor will tell you no. However, I’m slightly under 5 feet tall, and my pre-medication caloric suggestion was only 1300 calories per day. So, yes, on days when I am basically on bed rest, I will cut my calories to 800. If you’re 5’10″ and 190 pounds, you won’t be able to get away with this. Also, I only take 25 mg per day of the drug. If you’re on a higher dosage, eating that little will endanger your health. Don’t do it.

It’s really hard to cut calories that dramatically, anyhow, because Atenolol makes you really hungry and messes with your blood sugar. Even if you only eat 800 calories, they need to be spaced out throughout the day.

It’s hard to lose weight on Atenolol, and although the literature tells you to expect to gain 5 pounds on a beta-blocker, the reality is that it’s significantly more for many, many people. It sucks. But side effects are the same from other heart medications, as well as depression, anxiety, and migraine treatments. Just know there are a ton of people out there who feel the same way you do. I Googled countless message boards about the subject, only to hear the same stories, over and over again. These pills make you fatter. But for many, they also give you back a reasonable quality of life, and prevent life-endangering consequences. You may not have to be on the beta-blocker forever, and when you’re free of it, you can cardio to your heart’s content. (literally!)

I hope that answers some of the questions that have come my way! Please keep in mind, I’m not a doctor, and if you have issues with your medication, you need to talk to yours. Get a second, or third, opinion if necessary. I’m just a girl who has decided to relate her personal struggle with a sudden onset, chronic illness with the world. Each person is going to have a different experience.

I will say that, although I’m not always happy with my body or my lack of energy, the treatment I’ve received has resulted in a slow but steady improvement of my symptoms. I have a great support network of friends, people who love me no matter how big my hips get, and being very straightforward about my illness means people tend to understand when something goes wrong. I’m pretty lucky. But I don’t have the energy and the stamina for getting out in the world I once did. This is frustrating to me, often. I want to be better and healthy NOW, before I’m too old to enjoy life. I have to remind myself that sometimes, there’s a part of your life where it’s necessary to be a turtle. Some days are slow. Some days, you hide in your shell. But, eventually, you get there. :)

“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.

Something is WRONG with me. Nobody will pay any attention except to tell me how anxious I am. But there’s pressure on top of my head that crushes my skull and makes my head numb—always at the same place— my heart races, I can’t stand loud noises or things that vibrate, I hate light, I feel dizzy at a drop of the hat, there’s often pressure in the arteries of my neck, my right arm sometimes goes numb, pressure bothers both of my ears, and I gain weight constantly.

Nobody is going to care or take my situation seriously until I’m not alive anymore. But there is something physically wrong with my body that isn’t being treated, and it keeps me from even enjoying the time I do have to be alive and young and vibrant.

I want my life back. I do not want or find value in the life I have now, because these physical issues take the joy out of everything. :( It is so hard to have a simple good day. Most days, trying to do so seems to take too much effort.

Yes, I am anxious and depressed and panicky. Because the way I feel isn’t normal. I am not anxious or depressed or panicky about other things. I am anxious and depressed and panicky because of these physical issues that are robbing me of my life. I’ve gained almost a fifth my body weight in 7 months, but I also aged 10 or 20 years.

If I could live like this for 40 more years, or just have one or two years where I was the way I used to be, I’d pick the latter. I used to see life as big adventure. Now it’s just another day of struggle after another, and knowing there’s no end to it, that “it’s all in my head”…I don’t know how to handle that.

I know they’re not right. I know my body and my mind. And I get really depressed and anxious BECAUSE anyone who can help me dismisses me. But people don’t go to the beach, get a horrible 2nd degree sunburn, develop an infection because their parents tell them it’s nothing, collapse from panic attacks for two weeks, and turn into an entirely different person. Mentally, emotionally, psychologically, I am the same person. But something happened to my body and it changed EVERYTHING.

It is my body that’s different, and perhaps it’s also the never-ending “let’s try this” approach with drugs and tests. And as a result of all the “let’s try this” and “nothing’s wrong with you”, I’m constantly anxious because something is wrong inside my body, and I just intuitively know that nobody knows it but me. I’m not being a hypochondriac; I don’t necessarily think I have a brain tumour or something wrong with one of my arteries or cancer somewhere in my body. It might be something as minor as hormones, or something that got damaged by my illness this summer and just needs the right treatment. But until someone tells me what it is, every day I have any weird symptoms at all, I’m afraid. I’m afraid that by the time a doctor finds out what it is, it will be too late to fix it. I’m afraid to be one of those people I read about posting on the internet message boards who have been sick for a decade and don’t know why, and don’t have the resources or know the right people to actually get a diagnosis.. I don’t want to give up my younger years to an illness nobody understands.

My mind and my feelings are perfectly fine. I am just sad and panicky because my body does weird stuff that interferes with my quality of life. When my body no longer does the weird stuff, I will go back to being the person I used to be…not necessarily happy or calm, but not wondering every day if today is the day I’m going to die because there’s something on the right side of my body interfering with my brain and heart and ear and internal organs. Even my right knee is the broken one.

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.

For those who don’t follow me on Facebook, it’s been a particularly tough two days for me. I’m trying to be as strong as I can, to tough things out, but honestly, I realise I’m not a strong or tough person in a lot of ways. I’ve been fortunate in that I’ve survived some dark times, but I always had a sense that ultimately, my survival and how I navigated through the world following those dark times was up to me.

When it comes to illness, it’s not up to me. It’s up to science, up to medicine, up to God, up to the sheer luck of getting the right doctor who might prescribe the right thing, make the right diagnosis, order the right test. I do not always feel confident that I am going to be able to pull through this particular time in my life, I do not always feel confident that I received the correct diagnosis from the correct doctor. I waver back and forth from agreeing that it’s all a simple psychological problem, it’s all “in my head”, to feeling that the unexplained symptoms that doctors try to hide with pills or dismiss as unimportant because they don’t fit with any logical, simple diagnosis are important, and that I am in fact a very ill person that isn’t being heard.

Over the weekend, I made the resolution that on Monday, I was going to start dropping the amount of beta-blocker, a particularly side-effect-laden pill called Atenolol, I’ve been taking for about 6 months. A quick search on the Internet turned up countless message boards from people on this drug, wondering how to deal with the side effects. I made it through the initial phase of feeling to exhausted to move and actually became functional on Atenolol. However, I gained 25 pounds in 6 months, and when doing a Google search on this, found numerous medical studies that suggest a link between beta-blockers, obesity, and type 2 diabetes. I learned one in 5 adults today is currently on a beta-blocker; they slow down your heart rate and your BP, they treat anxiety, and are essential to people suffering from certain heart conditions.

The problem is, they are overprescribed, and once you’re on them, it’s very tough to get off of them. The withdrawal symptoms are so unpleasant that it hardly seems worth it to get off a drug whose major side effect is making you fat and sleepy, when the alternatives include heart palpitations, insomnia, depression, high blood pressure, and a host of other “rebound effects”.

I was prescribed a beta-blocker because I had a pulse of 120 for an extended period of time, and my body was releasing adrenaline constantly, causing me to have sometimes as many as 8 panic attacks a day. I do not know if this was a result of the infection I had that doctors claimed led to the development of my vestibular disorder, or due to an anxiety-related condition. My blood pressure was only slightly elevated, and since being on the beta-blocker, my panic attacks have ceased, but my blood pressure has become exceptionally low. Meanwhile, weight gain and being tired all the time are making it more likely I’ll develop heart problems.

A while back, two different doctors had given me the OK to cut my Atenolol dose in half, to see if this decreased the side effects. I’d never done this, because I was scared to mess with what was working. I’d been able to function like a normal person much of the time lately, stopped feeling convinced I was going to die, but hated myself for feeling fat, lifeless, and dependent on pills. Yet, I was afraid to make a change because I didn’t want a huge setback. I never found out why I mysteriously had heart problems when I’d always been active, energetic, and at the time of my illness, walked miles every day. I was at a relatively healthy weight, didn’t have the best dietary habits, but also didn’t have any significant health issues—mental or physical.

There was no explanation for why my heart should suddenly go out of control, not even the vestibular and panic issues the last doctor diagnosed me with, and it causes me a lot of anxiety to think that it might happen again…or, worse yet, suddenly stop.

Yet, reading about other people going through stories like mine, how a drug that helped them feel better was actually destroying their health and quality of life and ability to live life fully…it was enough for me to decide that I had options. One was to cut down on this pill to see if I really needed it, and if I do, why? What’s wrong with me that I need a heart-related medication to feel well and function properly? A visit to the cardiologist yielded no answers back at the beginning; he didn’t examine me, and ran a test to see if there were any physical abnormalities within the structure of my heart, and dismissed me with “You have anxiety. Go to a psychiatrist.”

I am still anxious, still scared. I’ve made it through two days on half a dose of this drug, and nothing about it has been easy. Every hour feels like three. Just moving makes me feel exhausted. I wonder if I’m going to wake up in the morning when I go to sleep, or my heart is just going to get tired and stop. I am afraid I won’t have enough time left to do everything in life I want and need to do.

I am afraid I am dying, and unlike those who suffer from something that is sometimes actually fatal, I have nothing to base that on except an internal feeling, and the fact some scary medical problems happened to me that countless tests and doctors couldn’t adequately explain.

I feel like there are too many things left for me to do in this world to die now. There are too many loose ends, things (good and bad) I never said to people that I’d want them to know, things I never took the chance on because I believed in myself too little, mistakes I never recovered from and others won’t let go.

I want a second chance. I want to be healthy, mentally and physically. I want to do more and be more and share more and touch the lives of others more. I want to make a difference, to be here for a reason, to be loved.

People my age, and far younger, die every day. Nobody is immune. But there are phases where I become convinced I need to get my affairs in order, that I won’t be here for as long as I need to…and maybe I won’t be healthy enough to make the most of those days during the time I’m here.

I worry that one day I won’t wake up, and all these people will never know how much I loved them, or respected them, or thought the world of them, but never said so, because people just don’t say things like that…and when they do, it is so often misinterpreted. I worry that people will say things like “She was a girl who had so much potential”, meaning I never actually accomplished anything of note with my life. I wasn’t all the things our society values; a rich, hot girl busy climbing the corporate ladder, or a loving wife and mother who took care of everything and everyone.

Instead, I lived my life like it was a never-ending 1920′s salon, full of art and witty people and intelligent conversation and food and cocktails and music and sex and life. Someone once told me my best quality was my joie de vivre, the ability to enjoy life when the world around me is going to pieces. In retrospect, that seems a little shallow to be one’s best quality. I don’t think I ever had it in me to be the kindest, the smartest, the prettiest, the most talented and accomplished girl in the room, but I think I have something rare I should have made better use of, but didn’t. Perhaps it’s because I didn’t know what to do, or was afraid of rejection,of being ridiculed and used and gossiped about, or because I just didn’t believe I was special.

Looking back, that seems silly to me. Once upon a time, I had health and energy and youth and vitality, and could have taken a world full of chances I didn’t. Now, I don’t know if I have enough energy to get out of bed, or I can make it to dinner without falling to pieces.

Sometimes, I’m really scared. That’s how I’ve been feeling lately…just scared, and alone, and like nobody understands. Yet, I don’t want to be alone. That’s my greatest fear in the world, dying alone when there’s still so much more I want from the world. When you’re ill, everyone seems to disappear, save those few close friends and family that will always be there, and most friendships seem remarkably shallow.

I wish I’d been the kind of person in my life that bothered to connect more; not just to know people or to be recognised or admired at parties, but to get to know people on a level that really matters. It took me three decades to figure out that being the most popular girl in the world didn’t mean being the most well-liked, and it doesn’t mean feeling the most loved and supported. It just means you’ve met a lot of people. I wish more people had known me, the real, authentic person who always felt too much and loved too much and cared too much about everything.

I wish I hadn’t made so many mistakes and acted as if life is a party destined to go on forever. Inevitably, it won’t.

I don’t know what’s wrong with me, or how to fix myself, or how to find peace when every day is a struggle. All I know is that if life is a party, it’s still early, and I’m not ready to go home yet.

This week, I’ve been struggling with depression, and a general feeling of apathy towards life. I’ve been overwhelmed by this feeling that most of what I spend my time doing isn’t something that makes me happy, isn’t something that makes me feel fulfilled, isn’t something that helps me grow as a human being. I’ve been feeling that nothing I do really matters, and if I were to disappear tomorrow, it wouldn’t really make much of an impact in the world, beyond causing sadness to my family and close friends.

It all started with the bad news about my job, and the realisation that if I want to turn this writing thing into a career, I’m not going to achieve that unless I’m constantly on the lookout for opportunities. Yet, simply the thought of having to search for new jobs exhausts me; I don’t have the optimism and energy level I had a year and a half ago, when I started with all of this. I realised from reading the boards that very few people made a decent living doing what I was learning to do, and that for 90% of the people out there, it was simply an alternative to every other crappy $8 an hour job and gave you the freedom to work at home, whenever you had the opportunity. Somehow, I determined I was going to be the exception. I was going to teach myself a brand-new skill set and excel. And for quite some time, I did. It was a career move that not only improved my life, but made me feel as if I were actually good at something.

Having that taken away from me, being put in the position to struggle and churn out as many articles as possible with a rather limited energy source to make up for the fact that not only was my pay being cut a good deal, but I wasn’t as good as I thought I was—well, it made me feel defeated. Ultimately, I’ve been depressed since getting this news.

The trip to the doctor had much the same effect. Weirdly, it cheered me up after my ENG when the person reading my test results said it appeared I had an issue in my left ear, because I do. It bothers me, often. It cheered me up even though I knew the results involved expensive and potentially painful surgery, because it was a diagnosis. It wasn’t in my head. It was a real problem with real solutions.

As I blogged about earlier this week, the audiologist was mistaken. Further testing revealed that I most likely do not have any sort of hole in my ear. I have TMJ, which can be fixed by extensive and painful dental work, and TMJ therapy. I also have another vestibular condition, one that supposedly improves over time and with rehabilitation exercises, but for which there is no cure.

Today, I felt extremely depressed because it was a bad ear day. Bad ear days seem to happen when there are abrupt changes in the weather, and in Atlanta, we have a new season every week. I woke up lethargic and tired, and all day, noticed my pulse rate and blood pressure were extremely low. (I may have to speak to my doctor about lowering my dose of medications, because they are working a little too well.) I had flashes of dizziness, pressure in my ear, and listening to music for about an hour made me feel crappy. Lo and behold, it became extremely windy later in the day, and even started to snow in some places….so of course it’s all related.

What depressed me, though, is that there was a problem for which there’s simply no solution. I have anxiety, which can be tough to deal with, and seems to center around scary physical symptoms, namely vertigo…which is the most common symptom of my disorder. I am on medication to help deal with the anxiety, and I’m supposed to go talk to a professional about learning new ways to cope with my anxiety, and the fact that, deep down, I’m really, really scared of dying. Not just when I’m 60 or 80 or 100, but now. It’s odd, for a person who went through life either never thinking about the future, or actively engaging in activities that I knew could go horribly wrong and kill me. As soon as I had my first panic attack—which, for those who have never had one, feels a lot like a heart attack and you wouldn’t know the difference—I started to become overly aware of everything my body was doing and feeling, and became afraid of what it would feel like when my body stopped working. I’m in my early 30′s, and I’m scared most nights when I go to sleep that I won’t wake up.

Much of this started, oddly enough, when actress Brittany Murphy died. It bothered me extremely that someone I kind of identified with, someone who was around my age and finally starting to get her life together, could just die from a combination of pneumonia and OTC drugs. However, it became a larger problem, and I started to have some fairly obsessive thoughts about not waking up every night I went to sleep after the night I dreamed about getting shot, and I woke up, and realised the SWAT team had shot my neighbour. That was followed by a co-worker of The Guy I Am Currently Dating, who was around my age, feeling sick, taking NyQuil, going to bed, and simply never waking up. A few weeks later, a guy I knew from Burning Man died from taking some tainted drugs. Then, a body was found in the dumpster of my apartment complex, barely wrapped in a blanket with a hole through his head. Later in the year, a good friend’s brother, also my age, passed away. It was right after that, when I developed some kind of illness after a visit to the beach and didn’t feel right—and at the same time, was visiting my parents, who are plagued by difficult health issues—that I started having these attacks. My pulse was over 120 for days, until they found some meds to help keep me calm.

Unfortunately, they also put me on a medication to treat anxiety in bi-polar patients, believing that anyone having acute anxiety and heart palpitations for days on end had to be manic. The medication sent me into a head space where I thought 18 hours a day about death, and what it would be like to die, and when the best time for me to leave the Earth would be. It’s silly to say, but I was really into watching “Big Brother”, a reality show for which I’d been a finalist years ago when I was young, attractive, and vibrant, and the thing that kept me going was remembering “If I die today, I don’t get to see what happens tomorrow.” Thinking about my own life in those terms didn’t affect me, but knowing that waking up another day so I could see the latest adventures of my favourite TV show did.

Needless to say, I spent more time in 2011 thinking about death, being confronted with death, and being made aware of the fact that my own death was imminent at any time than any person needs to. It probably isn’t any surprise that the result of all of this is a panic disorder that wreaks havoc on my life, and doesn’t always let me feel in control of things. It seems ironic, because the first three decades of my life were filled with the loss of loved ones; in fact, they comprise some of my earliest childhood memories. It is perhaps the mantra of my life: people die, things change, life goes on. The one thing that bothered me emotionally, for many years, was the fact that I had to say goodbye to so many people, but I was left behind to deal with life going on. I largely dealt with it by not thinking about it too much, other than in some of the morbidly depressing stories and poems I’ve created over the years, and in adopting a “live for the day” attitude that bordered on self-destructive. It’s as if I was routinely testing the limits of my invincibility, without ever thinking or caring about the results. I was an extraordinarily self-destructive, self-sabotaging, masochistic person.

Somewhere around the age of 27, my life changed a lot. I learned, little by little, there was more to me than that person. I learned I could not let that person take over my life, because I wasn’t strong enough to handle the consequences. It didn’t occur to me that my thoughts on my own invincibility would change, as well.

I understand I have anxiety whenever I have feelings reminiscent of the illness this summer that caused my panic attacks, because those panic attacks had me convinced, to a huge degree, I was going to die. I absolutely believed I was terminally ill, because I’d never had a physical illness that manifested itself as a mental problem, and I’d never had a mental illness that didn’t diminish with the help of a few pills.

I don’t ever talk about it, but I struggled with PTSD (post-traumatic stress disorder) for years. It didn’t limit my life, but it affected my journey a great deal. It caused me to make choices I might not otherwise make, to behave impulsively, to suffer from nightmares and insomnia, to engage in self-destructive behaviour that many could simply look at as the sum total of being a “wild child”. But it wasn’t until I had dealt with those issues in a way that worked for me that I became a newer, better person. Perhaps because I did it on my own, without therapy (I had a fairly negative experience on that count) and without pills as much as possible, it was a long process for me.

This current situation with the anxiety, it makes me feel extremely depressed. It feels like starting all over again, with a new set of problems I can’t always handle. While I can rationalise it by saying that it developed as a result of a genuine physical illness, one that requires me to go to rehabilitation and do some work so that my symptoms improve over time, it doesn’t make it any easier.

It doesn’t make me want to celebrate to know that I don’t need surgery, or some medical cure for a real, understandable issue. I know it should, rationally, because those things are horrible. What I see, however, is that I have a physical issue that might improve over time, but which, in some way, will be with me for the rest of my life. It doesn’t have to control or debilitate the quality of my life, but it’s an extra challenge, an unfortunate problem that just happens sometimes, and for which there is no cure. And since the symptoms of this incurable problem seem to provoke anxiety under certain conditions, I feel a bit of despair that perhaps I will never get better.

Perhaps I will never again be the person I was, and that’s hard to deal with. After so many losses in my life, so many times I’ve needed to start over, so many times I’ve ultimately found myself alone, with nothing to count on but myself, losing something as fundamental as my energy, my enthusiasm for life, my health, my resilience…I’m not sure I could exist without those things.

I’m not sure I could handle losing myself, abandoning a stronger and more determined,independent person, just when I was finally getting to know her.

Too many people I’ve loved throughout my life have been flames that have burned too fast, too furiously, and extinguished too soon. I used to believe that was somewhat inevitable for me, and didn’t care as much as I should have. Now, that’s the very last thing I want for me.

I want my life back, the ability to feel normal and energetic and healthy…and, yes, no surgery is good news. But it’s also something that fills me with sadness and makes me feel a little defeated, because I realise there are no quick fixes. I just have a long road to tread, and perhaps by the time I feel like myself again, I…and everyone around me…will have forgotten who that person is.

This year, celebrating Christmas Eve, and my birthday, and ringing in 2012 with the people in Atlanta I care about the most, it meant the world to me. It would mean the world to me under any circumstances, but because I genuinely wasn’t sure I’d make it to see those celebrations, it meant everything that I was.

I hope I’m not asking too much when I say I just want to know I’ll be able to do it all over again a year from now. I don’t know how much time would be enough on this earth to do everything I want to do, but I know I haven’t had enough, not by a long shot.

Definitely kind of good news! I had my follow-up with the super-duper ear specialist, and he told me that he believes I don’t have a fistula in my ear. So, that’s the good news, in that I don’t need surgery.

The bad news is, there’s still no clear answers regarding what’s wrong with me. The doctor’s official diagnosis was that I did have a vestibular issue in my right ear, but it has since largely healed itself. He believes that with the passage of more time and vestibular therapy , I should be OK and back to normal.

However, he also thinks—like many other doctors—that I have a panic disorder, which seems to be set off by physical symptoms. Whatever caused my illness this summer likely also started this problem with anxiety, so yet another problem that I need to address.

Part of me had been hoping for a clear-cut problem with a clear-cut solution, but I’m also relieved that surgery isn’t in my near future.

When will I feel better? I don’t know…but I’d really like my life back, and sooner, rather than later.

And I have a crapload of medical bills and take a lot of pills for someone who, technically, isn’t sick.

Oh, and since a friend e-mailed me to ask, this is technically my diagnosis.

It also makes me laugh, because months ago, I talked to a friend of mine, a very smart guy who plays trivia with us (on the team that always wins), and he told me he had very similar symptoms at one point in his life. I asked him what he did about it, and he said that, over time, it improved and became manageable, although he still had bad days with migraines and such. Because of his story, I went to see a doctor that specialised in the inner ear.

After months of tests and waiting and so forth, I find out that what’s wrong with me is almost exactly the same thing he suffered from, and the prognosis is the same…there are some exercises that help, but it gets better over time.

The person who gave me the most accurate diagnosis is the one that didn’t do anything other than talk to me, and didn’t charge me a thing. :P

It’s been a bit of a challenging week here so far, so you’ll have to forgive me for being a little forgetful about keeping everyone in blog-world updated. I had the misfortune to, a few days ago, run out of my prescription Valium about a week before the next prescription was to be filled. This is completely my fault; rather than being on the suggested dose of 5mg per day, I’ve been steadily using 7.5 mg per day for the past few months, the “set point” at which the desired effect of the drug sets in.

For anyone who hasn’t experience with this type of drug, Valium, and all the drugs in the benzo family (Xanax, Klonopin, and Librium, to name a few) are frequently prescribed—and over-prescribed—for anxiety, panic attacks, PTSD, and as one of many drugs in the cocktail used to successfully treat bi-polar depression. My experience with benzos started after my first admission to the ER in July, returning from a trip to the beach where I’d gotten heatstroke and 2nd degree burns, and started to experience lightheadedness, chronic vertigo, intolerance to light, and worst of all, these never-ending moments where I felt as if I were having a heart attack. Finally, three weeks after my symptoms began, I started hearing a “wooshing” sound in my ear that drowned out everything, and intense spasms under my ear. I thought I had an aneurysm, so I went to the ER.

After a lot of tests, they found nothing was wrong with me except “sinus tachycardia” (an exceptionally high pulse rate) and an elevated BP, probably due to the chronic panic attacks I’d been having. (I didn’t know they were panic attacks, as I’d never had one before. I legitimately thought I was dying.) They put me on Ativan (another benxo) and antibiotics for a supposed ear infection. Although the Ativan let me sleep, the vertigo and light intolerance never let up, and as soon as I was out of Ativan, the panic attacks returned. 3 trips to the ER later, they’ve put me on a beta-blocker to keep my pulse rate from elevating and a long-term anxiety drug called BuSpar.

From my perspective, BuSpar is evil. From the second day I was on it, I was sitting in the dark (because I couldn’t stand light) with vertigo too bad to ride in the car, and a serious fear of leaving my room. I cried for hours at a time. I wrote suicide notes and burned personal letters and diary entries I didn’t want anyone to find when I was gone. I seriously needed help. I didn’t get it. The doctor told my boyfriend that it took 10 days or so for the body to get used to the drug. By day 7, I was on the phone with 911. I couldn’t stand the movement of the ambulance, and I thought my head was going to explode. The right side of my face was paralyzed. In the ambulance, they told me I was exhibiting signs of “aura” (associated with migraines and seizures) and my pulse was 180, high enough to indicate a trans-ischemic-attack, rare in a previously healthy 30-year-old.

That’s when I met Valium. After a CAT scan, MRI, and tons of blood work, nobody could find a thing wrong with me. My scary symptoms were caused by a negative reaction to BuSpar, which works by blocking your dopamine levels. Oooops. If being on BuSpar was bad, the three days I spent detoxing from it were worse. They prescribed me Valium to help me through withdrawals, at 20 mg a day, a very high dosage for a petite woman with limited tolerance to prescription drugs. I still had horrible BuSpar withdrawals; “brain zap” that felt like electric shocks going through my brain, shaking, constant headaches, the inability to sleep or leave bed for days. I immediately made an appointment with a neurologist, given a history of epilepsy in my family, and arrived in a wheelchair, wearing sunglasses, unable to stand without assistance. Thanks, BuSpar.

Many doctors and many tests later, what they discovered is nobody knows what’s wrong with me. I’m off caffeine, limit chocolate and alcohol, and don’t put any drugs in my system that don’t come from the doctor. The result was always the same: I have a generalized anxiety disorder. I’m not coping with life. Take your benzos and see a psychiatrist. They tried me on Xanax and Klonopin, as well as Antivert for the vertigo. Nothing worked.

Nothing, that is, except Valium. Although I’ve inconveniently gained 20 pounds as the result of Valium + beta-blocker (my heart rate no longer rises high enough to burn calories, and beta-blockers are notorious culprits of a 7-10 pound weight gain due to water weight, while Valium makes you want to sleep instead of exercise.); I am actually functional. I self-adjusted my dose over time, finding out that at about 7.5 mg of Valium, I don’t have vertigo. I don’t have panic attacks (although, ironically, I do sometimes panic about having panic attacks, which manifests as a form of social anxiety. Two drinks with vodka, and it’s gone, which tells me it’s an anxiety issue.). I sleep more than I ever have in my entire life:;9-10 hours uninterrupted.

Since then, it’s been discovered by visits to specialists that I may be dealing with a vestibular (inner ear) issue that causes the vertigo, which in turn caused panic attacks, which in turn caused high blood pressure and pulse. So, possibly, I have a physical disorder that shouldn’t be treated with psychiatric drugs, or heart medication. Unfortunately, until a diagnosis and cure is established, the only thing that keeps my vertigo and panic attacks at bay seems to be Valium.

Valium is highly addictive. The Prozac of the 1960′s, it was called “Mother’s Little Helper”, because it was given as the cure-all for stressed out, disenchanted housewives who needed jobs and a nanny instead. Nowadays, doctors dislike prescribing it, because you can get addicted to it in as little as a week. If you abruptly stop using it, you can expect detox symptoms ranging from shaking, vomiting, and the inability to function as a human being to seizures, coma, and even death. (Amy Winehouse was on the benzo Librium when she died, though she obviously disregarded the “Do not mix with alcohol” warning.)

I’ve been using Valium for well over 4 months. I am on a very low dosage, but two separate times I’ve tried to discontinue use, I’ve had severe side effects. Quitting Valium is apparently a long-term plan; one that involves your doctors lowering your dose every 3-4 weeks until you’re basically done with it. My doctors aren’t aware of this, which is information out there at every rehab center and on every medical advice website. They simply want me to stop taking it, so they’re not going to prescribe it anymore.

Never mind that they haven’t fixed the primary reason I’m using it in the first place: my vertigo and panic attacks leave me alone and help me function. For a time, I was on the brink of losing my job and not able to leave my house. Now, life is often normal for weeks at a time, courtesy of the “not messing with my drugs program”.

I now basically have 3 weeks to see the ear doctor and hope for some sort of diagnosis that will help me get past all this, and a psychiatrist or GP that sees the value in either keeping me on Valium or doing a safe detox plan. On top of it all, I’m broke and my insurance doesn’t want to pay…they’re dubbing everything a “pre-existing condition”, although no one knows what condition I have.

So, I spent the past few days going through physical and emotional hell because I dropped my Valium dosage from 7.5 to 2-2.5 mg a day. I couldn’t cope. I finally got a refill, with the caveat that there would be no more Valium for me, so I need to find a qualified doctor to handle this problem.

As if I weren’t stressed and broke enough…now it’s back to hunting for doctors, solutions, and finding more guesses and experiments than actual answers. And I have a limited time frame to accomplish it, if I don’t want to spend the holiday season in my bed, detoxing from Valium.

Don’t mean to sound whiny, because I know plenty of people have it worse. But when life decides it hates you, it really throws some crappy shit your way, and says “Let’s see you get out of this one”, while laughing hysterically.

During this rather depressing period, I’ve been reading a biography of Sylvia Plath (there’s something for every mood, I guess). Interesting character; one it’s a little to easy for me to identify with, with her oversensitivity, attraction to older and accomplished men, perfectionistic and ultimately masochistic nature, and high level of intuition. I mentioned to a friend that, as far as the Jungian/Meyers-Briggs types go, Intuitive Feelers seem to have the most difficult road in life, either becoming so disenchanted with themselves and the world that they commit suicide or get involved in self-destructive situations, or try to save the world, only to become disillusioned and depressed when they cannot. Just as there’s been much written about the link between creative genius and insanity, or at least eccentricity, there also seems to be a link between NF personalities and the ability to live a long, quiet, understated life.

Plath’s story is sad, but the sadder one belongs to her husband, Ted Hughes. A poet who is also a narcissist, sadistic, and likely meets many of the markers for being labeled a psychopath, he not only pushed his manic-depressive wife to stick her head in the oven, denying us years of literary genius—but years later, the woman he had an affair with while married to Plath would also commit suicide, killing his child along with her.

Sylvia Plath is an understandable tragedy. She lived a lifetime suffering from inherited bi-polar depression, in a time when nobody knew what bi-polar depression was. The story of Ted Hughes makes far less sense. From a psychological standpoint, at least, it’s interesting how one person can have the power to destroy without ever lifting a finger.