As many of you have noticed, I stopped my daily blog entries before I could even get halfway though the A To Z Challenge. It is a lovely idea and a great group of people; I just honestly had no idea when I started this project in April that I’d also end up tackling a much tougher project: cutting back on my beta-blockers in an attempt to feel a little bit healthier.

I’m pleased to report that nearly 20 days after deciding to finally do something about the beta-blockers, I have successfully cut my dose in half. This is a much faster transition than doctor’s recommend, but one of the “special” things about me is that when I set my mind to do something, I tend to want to reach goals as fast as possible. I had a terrible two weeks of withdrawal and rebound symptoms, and know these symptoms may keep on going for a good while yet, after reading the experiences of others. But I’m proud of myself for making it this far.

One of the strange and most distressing symptoms is pain and swelling in my fingers, which make it difficult to write longer blog entries like this one. I’ve never had anything like this before, but do spend a large percentage of my day typing on electronics. I am hoping it is a temporary problem or side effect of drug withdrawals, and not an entirely new health issue or worrisome symptom of my “mystery illness”. In any case, all of this has caused me to simplify my life, check out of anything causing stress or deadlines, and having to give up on the A-To-Z challenge. I’d love if all of you who wrote supportive messages would keep coming back to visit, and my thanks for that support. I’m also very sorry for having to abandon something I was very excited over doing…that is not like me at all. I do tend to overload my plate with things I want to do and get very stressed out about that, and it just wasn’t something I could handle while going through withdrawal symptoms. I promise I will be back next year, though.

I do not know if cutting back on the beta-blockers has helped me, but it certainly hasn’t hurt. I’ve started to wake up earlier, started working even a minimal number of hours again, dropped a few pounds, and some days, I catch myself feeling way happier than I have in a long time.

One of the things that goes along with dealing with a chronic illness is that people think you’re depressed, especially when it changes your lifestyle from being the life of the party to being a bit of a recluse. Earlier in the week, The Guy I Am Currently Dating and I got into a fight because he found out I’d been spending time playing a game online every day, meeting new online friends, and didn’t mention it for a year or so. I understand why he was angry about it, that I kept something important to me a secret. However, when you’re sick, sometimes it’s important to have a space of your own, where people don’t treat you like someone who is sick…even the rare people you strike up friendships with via Skype or e-mail. It is important to have a space to just be yourself, the you that you were before something came along and took away pieces of your spirit and your life. It is important to meet other people, even strangers, who may be suffering in their own lives, but rarely talk about it because it is a relief to escape from the world and the people in it that consistently want to help, but just remind you that you’re not normal, and hurt you because you can’t give the thing they want: the old, energetic, healthy you back.

Sometimes, remembering what it’s like to be healthy for a few hours is more helpful to a person suffering with chronic illness that the most supportive and loving friend. You don’t love your friends any less, but when they are living out in your old life, in a world you can’t participate in, it kind of hurts and is hard not to be depressing or feel depressed after a while.

I do not generally feel depressed, even if I can’t go out and play. A friend of mine has told me that everything that has happened to me has made me a more substantial person. I am happy and appreciative of the small things; the TV shows I love, reading and writing, a lovely chat with a friend, a visit on the weekends, a surprise for no reason. I am no longer spending hours posting pictures of myself, and getting involved in arguments on Facebook, or spending every Sunday in bed with a hangover. I am not even killing myself with anxiety over sick family members, financial troubles, or even what has made me so ill for so long, and if there’s going to be a diagnosis or treatment. My primary focus in life is me and doing the things that make me happy, for maybe the first time in my life. Pleasing others is no longer something that is there to define me. It may seem selfish, and it may seem weird, but I am not depressed. Some days, I am even optimistic that a day will come when I have my life back, and still have that greater appreciation for the small things. Some days, I am even happy; I smile and I laugh. I am not always at peace with my situation, but I am at peace with myself more than I’ve ever been. There is a reason that when people are recovering from anything, whether it’s addiction, mental illness, or a physical ailment, “putting yourself first” becomes less of a foreign concept. I still feel guilty over it sometimes, but when “feeling the best you can today” becomes your most important thing, so many other things are secondary.

Healing, even a little bit at a time, is a personal journey…but I really do appreciate everyone who cares, everyone who leaves comments or chats with me on the internet or sends me Skype messages or posts things on Facebook I like. I know that The Guy I Am Currently Dating may be bored with all our “quiet time”, but the 100% truth is that I look forward to Friday nights with Boston Market and Amazing Race every bit as much as I did going to the coolest new restaurant, and drinking until 4 AM at the club. Yes, I still miss those things and someday, adventures may be part of my life. But for now, things that used to bore me and be met with a “Why can’t we DO something?” are now things to which I look forward.

Perhaps it’s fair to say all these struggles have helped me grow up, just a little, without my even noticing.

Thank you to everyone who is sharing my journey with me. It may not be the road I’d have chosen for my early 30’s, but I am not alone and I am not depressed. In fact, I’ve started feeling happier than I have in a long time, looking forward to things that are months away, without the caveat “If I’m still around”.

I would have liked to have the energy to finish my A To Z project, but instead, I spent April focused on healing, baby steps at a time, so that maybe I’ll be in a better place for next year’s A To Z April. 🙂

And who knows? Perhaps this less than desired chapter of my life will make a wonderful book someday.

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. :(

“Being sick allows you to check out of life. Getting well again means you have to check back in. It is absolutely crucial that you are ready to check back into life because you feel as though something has changed from the time before you were sick. Whatever it was that made you feel insecure, less than, or pressured in a way that was uncomfortable to you. You have to create a whole new life to check into.” — Portia Di Rossi, “Unbearable Lightness”

It has been a year since I first got sick, or almost, and the thought of braving the summer is somewhat terrifying to me. The heat, the sun, the TV shows that I watched throughout my illness—they all remind me of a time in my life when I was constantly afraid. I was afraid I was going to die. More than that, I was afraid I was going to die, alone and unloved and crazy and misunderstood and without ever doing anything positive with my life. I was afraid I would never be normal again, and because of it, nobody would ever love me, understand me, want to be my friend, find me attractive. In some ways, I felt like my life was over at an age that, by many standards, people consider the epitome of being young enough to be vibrant and enthusiastic about life, but wise enough to avoid the stupid mistakes you engaged in a decade earlier. I reached the age where it was time to be an adult, and all of the sudden, the world came tumbling down around me.

I am, of course, still not entirely well. I have a chronic condition that will be with me for the rest of my life, requiring medication and more rest than I’d prefer to need and more unwanted reactions to life than I’d prefer to have. I still have the occasional migraine with aura that may only last 15 minutes, but gives me such a sense of being out of control, that I am convinced I am going to die. I still have anxiety in places that are too bright, too loud, have too many people. I still can’t fly. I have a few really close friends in NYC that I’d love to visit and spend time with, but instinctively, I know that one of my favourite cities on Earth is too much for me, and that makes me a little sad. I still can’t seem to ditch the unwanted 20 pounds I gained when they put me on medication, something that makes me very sad. I can’t be as free-spirited and unconcerned with things as I used to be, because now there are consequences. If I forget to take my pill at the right time of day, drink too early in the day, push myself too hard or sit in the heat too long, there are consequences that are very unpleasant. If I don’t eat enough, or eat too many of the wrong things, or deny myself caffeine for days on end, my body rebels. It’s strange to suddenly be governed by rules and limitations.

My doctors have told me that over a period of 2-3 years, my condition will steadily improve. Symptoms will interfere with my life less and less, until they’re barely noticeable. Some people have issues with large, brightly-lit spaces for a lifetime; others can’t stand loud environments; still others can’t handle elevators or escalators.

Being me, and a pessimistic realist, I didn’t believe my doctors, who had been wrong so many times before in attempting to treat my illness. I am still young enough that 3 years seems like a lifetime. I imagine that, by then, I might be an entirely different person with an entirely different life, as it’s happened so many times before. It is hard for me to see three years down the road. It is hard for me to even imagine that I will be alive and well in three years. Some days, I doubt it. I have always had trouble imagining myself as a person with a future. Since my teenage years, I was convinced that I was going to die when I was 30. It seems coincidental, and yet almost too meaningful to be coincidental, that once I passed that mark, I developed a frightening illness that reminded me I wanted to live and didn’t really know how.

A year ago, I would not have believed that I could spend the day at a friend’s pool party without hiding from the sun the entire time, go to a rock concert, or travel to multiple cities on my own, places I’d never been before, to visit with friends. I would not have believed that I could handle a world full of buses, crowded stations, elevators, trains, and taxis on my own, along with almost 30 pounds of luggage added to my body weight.

I would not have imagined that in the year that’s elapsed since first getting sick, I’d have developed friendships that are among the most meaningful I’ve allowed into my life in years, simply because I took the time to talk one-on-one and invest myself in the kind of people who may never have caught my attention in a more vibrant, constantly moving social setting. I would not have imagined that not having something to do, somewhere to go, and someone to entertain almost every day would not only be acceptable to me, but would help me find a sense of peace and acceptance regarding myself.

Slowly, I’ve been checking back into life again, and the time I spent largely checked out of my old existence helped me to formulate a new one. One of the most shocking things I’m discovering about myself is that I’m not a co-dependent person. I’ve always thought I was, always been attracted to the guys who would constantly pay attention to me, take care of everything in my life, fix all my problems…and then suddenly run when it came time to make a commitment, or find myself looking for a different type of relationship. I like people, I like attention, I like being loved and cared for, but I have a self-sufficient streak that runs through my personality. I am happiest when I am allowed to engage it, when I can explore the world on my own terms from time to time. It is important to me to have friends and relationships in my life, to feel I am loved, to express affection…but my freedom and independence is just as important to me. Perhaps this means I won’t ever get married,or have kids, or my relationships will be of the non-traditional variety, or I’ll end up with a job that makes me a wandering nomad from time to time, but that’s OK. I find myself judged quite frequently for that aspect of myself, and the pressure to hide that desire for freedom, coupled with my natural distrust of other human beings until proven otherwise, has led me to seek out very clingy friendships and relationships. Yet, that very same kind of clinginess causes me stress and makes me unhappy.

Let’s be honest here, I lived with a roommate I didn’t really like or bond with for a very long time because I thought I couldn’t manage on my own, and cried and felt undue stress at the idea of being left to cope with living in a space by myself. This person was utterly toxic in my life, yet keeping that person around was less frightening than being alone. This is not the first time I’ve been through this scenario, and every time, once I deal with the shock of being left alone, I realise just how much happier I am. I’ve lived with ex-boyfriends and moved in with people I should not have because I felt like being on my own just wasn’t for me, and every time, I was shocked by the realisation that I felt freer and lighter when the person I supposedly loved and needed was gone. I didn’t want the person to be gone forever, I just wanted my own space for awhile. I never really knew that about myself. I like living in a world where there is a certain amount of personal space and freedom, and that’s balanced out by friendships and relationships that are truly important to me, not just having people around to have them around. I’m still an extrovert who gets bummed out if I don’t have enough social interaction in my world. Yet, I grew up valuing my personal space immensely, being able to hide out in my own room and “escape” from everything and everyone else. I thought that, like most people, I simply grew out of that, but I don’t think I ever did. I just told myself I *should*, because people have roommates, families, live together…especially in cities, people aren’t designed for personal space. But I like mine.

I’ve also come to accept a basic truth about me: I don’t like people. At least, I don’t like all of them, and during my time of illness, I came to see the idea of meeting and entertaining strangers as a drain on my very limited resources. It became harder to smile and appear charming in the face of people you don’t care for, or pretend to be interested in conversation that just *isn’t*. I don’t think it’s an accident that I’ve developed at least three strong friendships during the time I was ill, largely because it was the first time in my life I cared about meaningful one-on-one interaction with someone I suspect I might relate to, instead of “How many people can I get to come to my party?”. I’ve hosted a Meetup group for 5 years, and literally met thousands of people. Perhaps 20-30 of them have become friends; some of them have become my best friends in the world.

But, when I was sitting on the lawn talking about my childhood with my friend in Durham, or at a quirky coffee shop creating imaginary art in my head with a friend in Charlotte, or at a small dinner with 6 or so of my close friends in Atlanta, I realised how much happier and more content I was than at any of the bars or clubs or parties I’d been to recently. The difference was, I was really able to communicate and bond with people I truly care about, people who accept me and allow me to be myself. I didn’t have to flirt or accept and give insincere compliments, hug strangers, make small talk about “Where are you from?” and “What do you do?”.

I was telling a friend recently that I’d never been like that before. In fact, I’d had people end relationships and friendships with me over what was perceived by others as a disinterestedness in truly getting to know someone, and what I saw as “Whenever we turn everything into a group outing, more people means more fun!”. In some ways, my illness was stronger than my desire to be the centre of attention, to be the person that everyone looked at in a large group of people. I didn’t want to be looked at anymore, I didn’t want to have to meet expectations or offer meaningless social frivolities. I just wanted to be around people who understood, and really cared. My illness allowed me to see what life is like for people more introverted, more focused, less willing to engage in pretense and the attempt to “be seen and appreciated” than I have always been. At first, I was bored and depressed and hated it. I just wanted my old life back. As I started to get better, I started to see it’s one of the greatest gifts life could have given me. I value others so much more now, and learned it’s OK not to like everyone, and not to give a crap if other people don’t like you. I was reminded how authenticity was one of the most important aspects of my personality, and how often I’ve had to sacrifice that to please others or to be liked. I feel like it is a permanent change, that I no longer have the energy or the desire to do that. I don’t go to bars or clubs on Saturday nights anymore; I play trivia with my friends at a pizza place that doesn’t serve alcohol and closes at 11, so we sit on the bench in front of the building, talking and looking at stupid YouTube videos. And, strangely, I love it. When I am out of town, it is the thing I miss the most. It used to be something to do when there wasn’t a party to go to or an event to plan. Now, it’s something I look forward to doing.

I have changed and grown in many ways as a result of one of the most difficult periods of my life. I learned to let the self-destructive, attention-seeking side of myself go when it occurred to me that I wasn’t ready to die. I learned to appreciate people by admitting how much about my life I didn’t really enjoy, how much of my interactions with others felt forced and artificial. I’ve learned to balance the conviction that you have to appreciate today because there is no future with the idea that, in case I’m still around, I might want to make plans for my life 6 months from now. I’ve learned that living alone doesn’t mean being alone, and it’s far preferable to the stress of being around someone you don’t even like that much, and the negative energy they bring into your life. I’ve learned that substance counts, and I have a great deal of it, even though I spend a lot of time downplaying that aspect of myself. I’ve learned that feeling loved sometimes means someone understanding you enough to give you the freedom you need, and that showing you care about others means understanding the freedom that person needs. I’ve learned that it’s OK to say “No”, even if it makes you feel badly, because attempting to please others at the expense of your own happiness isn’t worth having panic attacks over. I’ve learned that while I don’t have all the answers to life, sometimes my intuition tells me everything I need to know about the world around me and the people in it. I’ve learned that I value my family for who they are, but it’s the friends who are like family that truly make me feel at home…and it sucks that those friends live in five or six different states, but it doesn’t matter much.

I’ve learned I’m stronger than I think I am. And, maybe, three years from now, I’m going to wonder what all the fuss and panic was about when I see a Wal-Mart, Target, or Kroger. I’m going to make changes between now and then, and I don’t even know what they are or why I’ll make them or if they’ll be the best choices…but I know I’m going to be around to make them. That means I’ve come so much farther from where I was this time a year ago, and although I feel frightened about the approaching summer, potentially going to Dragon*Con, or traveling, or just locking myself up in my room and focusing on work and making money, I somehow intuitively know I’m going to be OK. It used to be one day at a time in my world, and now it’s one week at a time. That is progress.

Today honestly couldn’t get any worse if I actively tried to have a bad day. I hate to say that, because I’m well aware that it can always get worse…and for me, it usually will…but today was a pretty rough day. The weight of the world crushed me, and turning to people for help only to have them respond in a way that was more frustrated and freaked out than I was feeling…well, it only made it feel as if there were two worlds on my shoulders instead of one. I came the closest to having a full-on breakdown that I’ve had in quite some time, sobbing for about two hours and drawing random X patterns with the sharp end of scissors on my chest in hopes that some of the unbearable weight of the world would just go away.

As I’ve blogged about recently, I’ve had recent relapses with my health that have scared me. I’ve started to think the doctors were simply not right in the diagnosis they came up with, and I simply ran out of money and energy to keep subjecting myself to doctors who told me nothing was wrong, and I just needed therapy and anxiety pills. Yet, I know something is wrong. I find myself still having rushes of dizziness that travel at lightning speed from my stomach to just under my ear, and feel like I’m having a heart attack. I still have spasms under that same ear that are uncontrollable, and feel like something connecting my head to my chest is about to explode. I still gain weight by looking at food, and this hasn’t been something I’ve struggled with throughout my life. Yesterday, a walk in the sun followed by a short exercise video sent my pulse rate up to the level at which I should start to get concerned, and my BP remained in the “slightly unhealthy” range all night. Worse yet, getting up to make dinner, I felt like my legs were going to buckle under me. There is something inside me that’s not right, and I know all too well they haven’t done most of the tests necessary to rule out cardiac or digestive tract issues, because my co-pay is so high and my doctors know I can’t afford the tests. If I had money, I’m fairly certain my lifespan would be double what I expect it to be.

On top of it, I mailed a check to pay my insurance premium that was never received, and because my roommate left me with more than a few financial difficulties when he abruptly left, I didn’t exactly hurry to correct the problem. When I spoke to a representative from Aetna at the beginning of May, she said as long as I paid the back balance owed plus a $70 fee, I could re-activate my insurance. I found out today, when I finally had the cash to do so, that what she told me was false. If your policy is cancelled, just as if you should decide to change your plan, you have to go through the application process all over again. I now have no insurance, my doctor won’t refill my prescription without an office visit (it’s apparently against the law to do such things with certain medications.), and I have less that a week’s worth of pills left. So I have to pay for cab fare to the doctor, the cost of the office visit, cab fare home, and the cost of the pills I need. I’m guessing the $16 I have currently won’t cover things.

This afternoon, I got an e-mail from someone saying “Aetna needs more info from you about your medical history”, and I had to spend an HOUR on the phone with this lady explaining why I saw 13 doctors and was diagnosed with 8 different conditions and put on 10 different medications in the span of a year.

Of course, it was all “Yes” or “No”, so I couldn’t just say “I have one problem and take 2 medicines for it. Everyone else was just wrong.” It was all extraordinarily tedious, and I still don’t know if I’m getting insurance. She said I should hear from Aetna in 5 days.

At least she was nice about it, but still…I feel like when I was sitting in the street with next to nothing to cling to in terms of hope and a better future, and the ability to enjoy my present should the future not be something too extensive for me, someone randomly came around and hit me with a baseball bat.

Ironically, last night, I wrote these thoughts in my private journal, after having an episode of dizziness and rush of blood to my heart that made me almost grab the ground for balance. Whenever I realise that despite treatment, and being seen by numerous doctors, my health is not improving, I start contemplating the inevitability of mortality…the “when” and “how” my death will occur, and most frighteningly, whether or not I will be alone and scared and wishing for just one more day of being around.

I was going to post that entry, about love and death and the battle between appreciating each moment and completely self-destructing because, for some of us, life without freedom, life with restrictions, isn’t so easy to appreciate…no matter how much love happens to be around you. I realised that over the past year, the more my body seems to fall apart and limit and betray me, the more I have the kind of love and friendship and support and appreciation and admiration I’ve wanted my whole life, yet could never seem to hold on to when I seemingly had so much more going for me, so much more life to which I could look forward. It’s a cruel irony, or a lesson, and I’m not so sure which.

On second thought, perhaps I won’t post it. I’ve already sent some letters to people in my life that matter to me. I’ve already written some letters so that, if something happens to me, those who are left behind will remember how much they were cared about.

I’ll just let everyone watch the last episode of House instead. It deals with fear and mortality and self-destruction and regret far better than I ever could.

But it doesn’t make this particular day any better for me.

“Women are born with enough patience to stay and enough strength to move on. Don’t take her for granted, because you will regret it.” —Anonymous

I saw that quote on someone’s FB page today and liked it. Sometimes, the simplest things in life are the most important lessons to keep in mind.

Anyhow, back to Germs And Apathy. Wouldn’t that be a really cool name for a band?

If there’s anything that tops the list of “Stuff That I Hate”, it’s being sick. I’m not talking about the dramatic kind of illness that took over my life this past year, or some of the really serious ailments that some people suffer through on a daily basis. I’m talking about the kind of being sick where you feel like you want to curl up in a ball and die, but everyone says “You’re not really that sick”, so you’re supposed to suck it up and go about your day in a fairly normal fashion.

The interesting thing about being sick is that it enhances the level of apathy hormone in my body. If you know me at all, you know I’m not a laid-back person at all. I stress out over everything from work deadlines to how I’m getting along with friends to worrying about things I don’t want to do that are going to happen two months from now. If there’s a feeling that I can stress out about or blow out of proportion or make the most important thing in my universe that day, I will do it. It’s not even a conscious choice. It’s just happens. Any kind of bad news or tension in my life completely throws me for such a loop that I find it impossible to just “chill”. I am not, despite my collection of Jack Johnson, Jason Mraz, Bob Marley, and John Mayer, a “Zen” kind of girl.

I’ve tried a lot of things in my life to stop caring about everything in the world to the level that it becomes a national emergency, and to put some sort of screen over the intensity of my feelings so that everything is a little duller, a little less dramatic. Drinking is fun, but actually typically makes me more high-energy than normal, and amplifies whatever mood I’m in that day. Giving up caffeine had little effect. I got kicked out of yoga class for laughing at the obviously Freudian connotations of the teacher’s instructions. Tea is only good when it’s winter. The anti-anxiety medication I’m on isn’t a high enough dose to accomplish mellow (although I do have to say that taking doctor-prescribed Klonopin was the closest I’ve ever come to feeling like a totally chilled out, mellow person. It was kind of like having an out-of-body experience. Of course, they took me off of that right away because the “mellow” was achieved through being stoned off my ass.)

I’ve kind of had to accept that, by nature, I am not laid-back. Even on vacation, part of me can’t sit still for too long before I start thinking “Where am I going next?”

Yet, being sick turns apathy into overdrive. I am hugely behind on work (I let my boss know that this was because I was sick), and if I tried a little harder to get stuff done, I could improve that. But I’m really tired, so I haven’t done that yet. I started thinking about a situation earlier in the week that caused me emotional distress, and it seemed I no longer have any emotional distress response to something that affected me greatly. I think about my plans for the weekend, and am largely like, “Yeah, whatever. I just want to stay in bed.” I’m not really too concerned about anyone or anything today, and really just want to lay on the bed and watch Law & Order re-runs.

It occurs to me that some people are like this all the time, that it doesn’t take being overrun by bacteria to not take life too seriously, to just know that stuff will work itself out, the people who like you will be in your life no matter what, and if you really don’t want to do things, you don’t have to make yourself miserable out of obligation. Part of me is kind of jealous. I’d like to be that kind of person, maybe just for a week or two, see how much easier life is.

Of course, I would not like to have to be sick to accomplish it.

I don’t actually know what’s wrong with me, other than I have a fever, am very tired, apathetic about most everything, and have a head and chest full of ick. Last time I remember feeling this “mellow”, it turned out my roommate and I had both gotten bronchitis, and I went to the Northeast and partied anyway. (martinis apparently do not kill bronchitis.) I might have bronchitis. I might have a really nasty cold. I might have just gotten sick because my body objected to me planning a trip home to see my family and launched a pre-emptive strike against that idea.

I’m not too worried about it, mostly because I’m not too worried about anything. If I’m still sick tomorrow, I’ll fit in awesomely on 4/20.

I’m happy to report I’m feeling much better in general (although it’s raining, and that seems to activate the dizzy button in my head), and the anxiety and depression I was feeling was simply the fallout from me messing with my medication. Even though I returned to taking it as prescribed, the up-and-down rollercoaster effect the entire week had on my body, mind, and spirit was just a bit too much for me to handle without having something of a nervous breakdown when my roommate was kind of an ass and my toilet broke. (these things have since been fixed.)

Fortunately, I’d had an appointment to go and see my doctor on Tuesday, which was how I began my Valentine’s celebration. The Guy I Am Currently Dating came to pick me up and drove me to the doctor’s office. As always, she spent a long time with me talking about my issues, and agreed that a majority of my issues were related to the vestibular disorder I’d been diagnosed as having, and the health-related anxiety and predisposition to panic attacks. She gave me instructions not to mess with my medications until the next time I saw her, and she assured me that my heart, lungs, and other vital organs were perfectly fine.

She also reassured me that feelings of anger and depression and low self-esteem were natural, and almost everyone who’s been told that they’re facing a long recovery process and need to learn to live with something that there is no cure goes through that, whether the illness is life threatening or not. She pointed out to me that, in certain ways, my extensive medical knowledge, gained from a lifetime of reading and exposure to the field, and friendships with people with actual medical knowledge, was actually enhancing my symptoms. Apparently, highly intelligent and highly intuitive people are more likely to suffer from anxiety issues, simply from thinking too much, and believing whatever they’ve read about applies to them. For instance, medical residents routinely come down with a number of illnesses, all induced by hypochondria. Studying a brain tumour leads you to imagine every little thing in your head is a symptom of a brain tumour, since you are aware of many things that are symptoms. Certain personality types are prone to suffering symptoms after reading about them; oddly, the same personality type that excels at method acting, and can bring on not only the feelings of but physical signs of certain ailments. In the end, she told me to take my pills, eat right, exercise, stop stressing about weight loss because it would happen slowly on this medication, and to realise my problems were a simple vestibular disorder that happens to cause some weird things to happen, much like the struggles of chronic migraine suffers. She told me to talk to a psychologist specialising in Cognitive Behavioral Therapy, stay off any other drugs anyone might wish to prescribe me, and go to the vestibular rehab sessions. Mostly, she told me the only “cure” for my problem was time and a willingness to keep on moving past the obstacles, and eventually, things like depression would pass as I retrieved my self-confidence. All that was very good to hear, and I left feeling pretty awesome about things, actually.

Tuesday evening was a low-key Valentine’s Day…it was Tuesday, and both The Guy I Am Currently Dating and I had a ton of work. So, we exchanged cards and gifts, and went to play trivia! It was one of our best trivia nights ever…we were in 1st all the way down to the tie-breaker. We tied the tie-breaker, but the other team handed it in first, so we still came in 2nd. ARRRRGH. We’re trying our best for that 5th place spot, and the tournament is in two weeks. Of course, plenty of other teams are trying to get in the top 5 as well. There’s really no incentive, other than we’ve been in the top 5 for the past 4 tournaments, and we get a plaque. I like getting plaques. It reminds me of being 12 years old and getting an award for something that’s really awesome when you’re 12.

The Guy I Am Currently Dating bought me a stuffed blue M&M. I love it. No flowers or balloons or chocolates, but I love my M&M. Everytime I go to NYC, I bring back an M&M for him from the M&M Store. Last time, I got him the pillow shaped red one for the bed…and he got me the blue. The colours of the M&Ms correlate to different emotions. Blue is happy and energetic.

I got some other lovely Valentine’s gifts from friends and family in my life, including a beautiful book called “The Art Of The Moment”, DVDs of “Phantom”, “Chess”, and “Les Mis” from Royal Albert Hall, a few copies of a book written by an aspiring author friend (one of which was immediately passed along to The Guy I Am Currently Dating), and a poem. Not to mention, there were of course some Facebook greetings, which always spread the love. Naturally, I bought myself a Valentine’s gift, too, long before the holiday. I’d pre-ordered the latest DVD in the Twilight series, and it arrived on the 15th, so…that’s what we’ll be watching this Friday.

The Day After Valentine’s Day was pretty good, too. It marked my debut with Atlanta’s Write Club Atlanta, a group of writers, actors, directors, and other artistically inclined folks who put on a show that features three pairs of performers reading 7-minute stories/poems/monologues composed on opposing subjects. As it was February, ours all had to do with things that could (but did not have to be) Valentine’s Day related. My round, “Stay Vs. Go” had me representing “Go”.

I had a million reasons not to do this sort of thing; getting on stage with bright lights, a sound system, a huge crowd, and just having been diagnosed with a vestibular disorder makes something that most people dislike by nature (public speaking) even more challenging. Add to that that I’m a self-conscious person these days, having gained 25 pounds and learning it’s a long road to losing weight on a beta-blocker, and it would seem that signing up to get up on stage in front of strangers…and then invite all my friends…would be a remarkably bad idea.

It wasn’t. In fact, my friends were very supportive and the Write Club people very kind, diverse, and funny. They’re the kind of people who not only embrace quirkiness but demand it, something I’ve missed since living in Atlanta. I’d definitely participate in their projects in the future, and will certainly return to hear other people read their works. It’s just a good, creativity-affirming time.

Also, I actually ended up winning my round (audience applause is king in these situations) although the guy who wrote about “Stay” was really funny. I actually clapped for him, until I remembered audience applause counted, so I was effectively voting against myself. Oooops. The best part was hearing praise and encouragement from other people on my way out. I met a group of people who asked if the story I’d written about was true (absolutely, 100%, and then some…I had to omit quite a bit in the name of time and because not everything is funny.) I also met a girl who told me she knew exactly who I was talking about in my story ( a humorous anecdote based on a guy I went out with a few times), because her friend met said guy at a party and almost went out with him. It’s a small, small world.

I’d post my composition here, but, it will eventually be released in podcast form…so, all in due time.

Most importantly, I conquered a potential fear. I wondered if this inner ear/dizziness problem was something that would keep me from ever getting on a stage again. While I’m not quite up for doing a musical yet, I proved to myself that the answer is “No”. I may be afraid of having a panic attack, but I can get up on stage for 10 minutes. I can go to parties and concerts and even shop at Kroger. I can start working off the extra pounds with exercise, and learning to cook for myself. Maybe I can even travel.

After the show, I went out to a nearby pub for a few drinks and conversation with a group of close friends here in Atlanta. One of them told me about a time in his life he went through a similar situation that I’ve been dealing with, albeit for different reasons, and likely around the same point in his life that I am at right now. (my friend is a bit older and wiser than myself, though just by a few years.) It made me feel, for the first time in months, I was talking to someone who understood.

Few things make you feel stronger than talking to someone who understands, who has been where you are, and survived.

All in all, I had a pretty good week, although work has been intense, I started a new project, things kept breaking, and I feel the internal need to slow down and rest, but have too much to do. Also, it has occurred to me that I may have offended a friend/acquaintance of mine, as I sent a “here’s some random “thinking of you” stuff in the mail” package to him, as I’ve been known to do. Yet, I’ve not heard from him in quite some time..so, I don’t know. I tend to offend others unintentionally and when I’m not looking. I’d say I’m paranoid, but the fact that I’ve actually lost friends I cared about without explanation, have been kicked out of social groups, and still avoid certain places in multiple cities for fear of running into those who are openly not Alayna fans…well, I’d say I’m just a realist. ;)

I hope you all had a wonderful Valentine’s Day week, as well…single or couple, married or not, children or not, long-distance or in the same house. I like Valentine’s Day because it’s a reminder that there’s so much love in the Universe, and it’s the kind we could be putting out there every day, without all the inhibitions and insecurities and judgments and limitations. I’m not just talking about romantic love and sexual attraction (though it applies to that, too), but to friendships and familial relationships and saying hi to that barista at Starbucks you have the secret crush on. I’m talking about remembering to put love and support and compassion out there as much as possible, and to have more true friends, and fewer acquaintances (my personal focus for this year, along with getting back to myself, physically and emotionally.)

I’m also incredibly happy my toilet is fixed, although the Y on my computer is not.

That being said, I kind of wanted a balloon. I love balloons. :P But I’m learning to be a little less high-maintenance. ;)

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.

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.