Through dangers untold and hardships unnumbered, I have fought my way here to the castle beyond the Goblin City to take back the child that you have stolen. For my will is as strong as yours, and my kingdom is as great. You have no power over me.

I can’t do this anymore.  I really can’t.  I’m almost certain that it’s going to kill me if I even try.

I’ve smiled pretty for you.  I’ve practiced my lines so many times so that I could recite them flawlessly, eloquently, with the poise and vapid despair that you helped to create within me.  I tried so hard to remove from myself every flaw you perceived in me.  I strived to become the person you all said I should be.  My heart broke every time you told me it wasn’t good enough, I wasn’t good enough.  I wept every time you pushed me away.  I felt my world fall to pieces every time you turned your back and walked out on me because I didn’t measure up.  Don’t you know the only damned thing that I ever wanted was to hear you say that you loved me?  Everything I’ve ever done was to make you love me, to make you proud!  And for what?!  I studied. I did my hair.  I dressed up.  I had the friends you wanted for me.  I wore the makeup to look so perfect for you.  Was I too stupid?  Too unpopular?  Too ugly?  What did I do to wrong you?  Where did I fall short?

I’m done trying to please you – any of you – anymore.  All it ever brought me was misery, pain, fear, and disappointment.  Twenty-nine years is too long.  I’m not going to be the person you want me to be anymore.  I never was.  No matter how hard I tried, it was never really enough, was it?  Not in your eyes.

I won’t spend hours putting on makeup and doing my hair to make you think I’m beautiful.  I won’t keep my mouth shut when I have something to say so you’ll think I’m polite.  I won’t smile and pretend that everything is okay when my whole world is crashing down around me.  I won’t feign strength when I’m trembling so hard I can’t even breathe.

I’m sorry that I’m not what you wanted me to be.  I’m sorry that I’m not who you wanted me to be.  I’m sorry I don’t match the ideas, or fit the mold, that you had in mind for all that I should be.

Wait.  No.  To hell with that!

I’m not sorry!  I did not fail you.  I’ve done nothing wrong here!  What the hell do I have to apologize for?  To feel guilty for?  You have failed me.  You are responsible for the sadness, depression, self-loathing, and years of torment.  But please don’t waste my time with a half-hearted, half-assed apology.  And don’t bother trying to sound your disagreements on these deaf ears.   I will never again waste an ounce of my precious energy on any of it, from any of you.

My life is mine now.  I will smile when I am happy, and never again to fight back tears.  I will love with every joule of passion that exists within me, and not question the fact that I deserve the same in return.  I will be unedited, unabridged, uncovered, and unafraid of your perceptions.

If you can’t handle the way I live my life, then please, by all means, get the hell out of it.  I promise not to lose any more sleep over you.

<3

Netiquette and Common Sense

I’ve been around computers since I was about 6 years old. My very first computer was a Radio Shack Color Computer. Man, that thing was sweet! The actual computer itself was housed in the keyboard (which was freaking huge) so it weighed about 15 pounds, and it loaded data from a cassette tape. There was no such thing as a mouse back then. Everything was done by typing (similar to what most of you know as a DOS prompt now, kinda.) “Color Computer” was quite the misnomer, however. It was greyish silver and black, as far as the hardware goes. And there was no dedicated monitor for it. Instead, I used my television (an 11” black and white tv set) to see what I was doing. It was rather primitive, but it gave me endless hours of fun.

A few years after that, I was introduced to a slightly better world of computers with an 8088 with a monochrome (amber and black ftw!) monitor and a 2400 baud external modem. This was my entry into the world of social computing with BBSing. This was well over 20 years ago. This was before MySpace, Twitter, FaceBook, and all the social media that 99% of you know of. In fact, most of you have never heard of BBSing. But for those of us who remember it, it was a great time in social BBSing. (For some of us, it still is!) There was a certain unspoken code of netiquette that was followed by most people back then. It seems like people these days just don’t seem to “get it” as it relates to socializing in cyberspace. I like to think that most of my friends are intelligent, creative, bright, funny, wonderful, charming people who are able to conduct themselves in a way that shows them in the best possible light. Unfortunately, I log on to Facebook, and I am proven wrong. I’m just going to give you all a few basic little pointers, and I’m not going to name any names or point any fingers here. We’re all guilty of breaking one or two of these rules from time to time, and that’s fine. But I think some of us need to be reminded of some things. So here goes.

1. What you post on the internet, regardless of your security settings or how safe you think you are, is not 100% safe from being seen by the rest of the world. If you don’t want everyone in the world to see it, don’t post it. This includes naked photos, nearly naked photos, commentary about how drunk you were last night, commentary about who you hooked up with last night, complaints about how much you hate your boss, discussions about your bowel habits, photos of your new panties, pictures of your random drug paraphernalia, or other such idiocy. If you do post it, I do not want to see you bitching and moaning about someone forwarding the pictures to other people and embarrassing you. You’re an embarrassment to yourself. You’re the idiot who posted it on the internet in the first place.

2. You don’t need to post every single thought you have in a given day as a status update. Really. You’re not a philosopher. You’re not a poet. You’re just an average person with an overinflated sense of self-importance, who happens to have an internet connection and a Facebook account. The rest of the world really doesn’t think you’re all that clever. Your puns aren’t that funny. Your jokes aren’t really cute. Once in a while, we might chuckle slightly for a half of a second at something you’ve written. But the other 47 updates you post in a day are just annoying. Seriously.

3. I don’t give a damn what song you’re listening to. I sure as hell don’t want to watch 36 music videos that you’re watching. In fact, it usually makes me wonder why I consider you my friend. I mean, really, Lady Gaga? Seriously? Backstreet Boys? Are you kidding me? Do you even HAVE a soul? I only ask because I really don’t know after seeing the collective vomit pile of music you listen to. It’s really disturbing.

4. If you spend all your free time playing Facebook games and are devastated when something terrible happens to your game, you fail. At everything. It’s a freaking GAME. Get over it. I could understand it if you were 6. Maybe even 15. But you’re a freaking adult. Grow up and jump into the real world. By the same token, I don’t give a damn about your farm, cafe, restaurant, mafia, brothel, chicken coup, fish pond, or any other lame-assed virtual thing you’re trying to build. Stop sending me requests. I have a special little script installed to block the crap from my news feed. All of you who post status updates about Farmville and Hookertown and Mafialand get blocked from my news feed immediately. Yes, I am that annoyed by it. If the most interesting thing you can find to talk about is a Facebook game, then I’m probably not missing much by ignoring your posts.

5. Chain letters were lame back in the days of snail mail. They’re lame in email messages. They’re lame in text messages. Guess where else they’re lame? In status updates!! You posting some grammatically-incorrect, horribly misspelled statement in your status is really not going to raise awareness, money, sensitivity, or concern for any issue or cause. If you think it will, well, then I’ll start a chain mail status update and collection for your particular kind of “special.”

6. You don’t need to talk like a piece of trash to be thought of as cool, or popular, or awesome. I think that’s pretty self-explanatory, so I’ll leave it alone.

Hopefully some of you will take some of these things to heart and use them. Note that this is just a short list, and it’s just a starting point. Feel free to comment and add some more suggestions for your fellow internet users.

As always… <3

Another “new” medication… Back to hell…

About 6-8 months ago, my primary care physician attempted to start me on a specific type of treatment (which I don’t feel like describing more specifically here) to treat an issue I’ve had for several years (which I also don’t feel like describing more specifically here).  After 4 months of this treatment, it became apparent that my system was not going to tolerate any of the medications that were required.  She put me on, and subsequently took me off of, one medication after another before abandoning the idea of the treatment.  There were quite a few different reasons (read:  side effects) that caused me to decide I wasn’t able to tolerate the medications, and to cause her to say it was no longer safe to proceed.  One of these side effects was an extreme increase in the frequency (and severity) of my migraines.

I’ve had migraines for years and years now, and the frequency has changed, depending on stress-levels, other medical issues, medications, and other triggers.  On average, I’d get one every month, or every few months.  They’d be moderate usually, and rarely ever severe.  They usually only lasted a day or so, and would go away on their own if I just slept a bit.  For the past several months (since early this year, basically) they have been intolerable in length, frequency, and severity.  I’ve been having more days WITH migraines than I have without.  They’re lasting for more than 7 days at a time, and have been more severe than anyone can tolerate.  Today, in an effort to remedy this issue, I went back to the neurologist.

To make a long, boring story shorter, but no less boring, he did a full exam and decided to prescribe a medication I took previously.  It helped a bit with my seizures, and kept the migraines well-controlled.  That being said, I’m not happy about taking it again.  The name of the medication is topiramate.  (The name brand is Topamax.)  I’m sure you think I’m insane for not wanting to take it, considering the fact that it did so much to help.  The reason I don’t want to take Topamax again is because of its side effects.  It causes changes in taste, inability to concentrate/focus, aphasia, paresthesia (pins-and-needles sensation in the extremities that, for me at least, was so severe that it would often have me in tears), burning and/or numbness, slowed reaction time, difficulty speaking, memory issues, coordination difficulties, confusion, nervousness, aggression, irritability, depression, fatigue, excessive movement, tremors, excessive thirst, digestive issues, dry mouth, skin problems, hair loss, and sleep disturbances.  Now, you might read those and think, “They’re really not so bad.”  Understand that I had *ALL* of those issues while I took topamax, and I had them without relief.  The pain from the paresthesia was severe.  The issues with concentration, focus, speech, motor skills, memory, and reaction made me feel like a complete and utter idiot.  I typically pride myself on my ability to use words to paint a very clear, concise picture.  When I was on Topamax, I was barely able to string together a proper sentence without feeling like a moron.  The tremors were so severe at times that I couldn’t settle in to sleep at night.

I’m starting tonight, at 25 milligrams every night at bedtime.  Next week, I’ll increase to 25 milligrams at night, and 25 milligrams in the morning.  I’m not looking forward to having to deal with all of this again.  The years I spent on this medication previously were damned near torturous, and I doubt that much will be different this time.  I wish that, just once, I could choose between intolerable and tolerable, instead of having to choose which hell I prefer.  I’m hanging in as best I can, but it’s really hard to keep going when you can’t see a light at the end of the tunnel.

What I Am

I’m a real woman. A real, live, flesh-and-blood embodiment of femininity. I’m not a size 2, I don’t have perfectly applied makeup at all times, my hair isn’t always perfectly styled, and I’m not going to wear a push-up bra, a dress, and stilettos to stand in the kitchen and make you a gourmet six-course breakfast, but I am still beautiful, even in my sweatpants and a Metallica t-shirt with no makeup and messy hair while the bacon pan is smoking, the toast is burning, and the eggs are getting cold. I’ll foolishly and secretly compare myself to the models in my favorite magazine, knowing full well that they’re airbrushed and made-up, while joking that I could look like them if I got paid to starve myself, too. I will not live on dry lettuce so that your friends think you have the most beautiful woman in town, but I will make damned sure that everyone knows I’m more in love, devoted, and supportive than any man could ever ask. I will not place your worth solely on the money you spend on gifts for me, but rather on the time you spend making sure I know how much you love me. I may not be able to have a witty, intelligent conversation about politics with you over the newspaper on Saturday mornings, but I will listen to every word you say, and I will smile at the passion you have in what you believe. I may have to make you stop at too many rest stops on long car trips so I can go and pee, but I won’t yell at you when you pull to the side on a deserted stretch of road to do the same. I might not be willing to go camping out in the woods for a weekend in the middle of summer, but I will sit with you on the front porch, drinking a beer, watching the summer thunderstorms. I might ask you to be too affectionate in public, but it’s only because I want everyone to know that you’re the only one I want. I will curl up on the couch with my head in your lap while we watch old MST3K episodes together. I will make sure that you have plenty of time with your guy friends, as long as I have my girl time. I will be your housekeeper, personal chef, goddess, wife, lover, partner, muse, biggest fan, best cheerleader, and the love of your life. All I ask is that you be yourself, love me even when my mascara runs, kill the spider in the bathtub, hold me when I’m scared, and let me know just what I mean to you.



Time after time…

I’ve spent the last couple of decades dealing with one medical issue after another. I’ve stayed positive. I’ve been strong. I’ve taken my pills, eaten my peas, given my blood, and submitted to every test, treatment, and diagnosis that has been thrown at me. I’ve pushed, I’ve forged ahead, I’ve taken every setback, and I’ve played through the pain. For those I love, I’ve tried so hard for so long to be tough, to not cry, to not let it show. I’m tired of being tired. I’m sick of being sick. I can’t fake it anymore. I just can’t.

I know that giving up is taking the easy way out. I know that it’s weak. I know that it’s selfish. But I have smiled and laughed through excruciating pain and fear for long enough. I’m sick. I don’t know what’s wrong with me. My doctors, try as they might, can’t seem to figure it all out, either. I’m scared. I’m terrified. I don’t know how much worse things are going to get. I don’t know what to expect next. I don’t know what’s happening to me. I’m tired of the pain, and I’m tired of the fear. I’ve been strong for long enough. I’ve kept up appearances for long enough. I can’t do it anymore. I have nothing else left to give the fight right now.

It’s my turn to be weak, to fall apart, and to be allowed to feel, honestly and without shame, how I feel. It’s my turn to cry, to pull my hair, and to ask you for your strength. I need you to be strong for me. I don’t need you to tell me that it’s all going to be okay. I don’t need you to tell me to buck up. I don’t need you to tell me to just keep hoping, keep praying, and have faith. I need you to tell me that I’m allowed to feel this way. I need you to tell me that it’s okay for me break down and fall apart.

If you’re not willing to see me through this, or if you just don’t care, just leave now. Spare me the empty sentiments and the feigned concern. Spare me the theatrics and the pity. I don’t need it. What I need is to be allowed to be human. Just this once, let me be scared, sick, and in pain… And just promise me that, no matter what, you’ll still love me, and you won’t leave.

Another medical update, slightly overdue.

In the past 4 weeks, I’ve had a few appointments and some changes. Here’s a quick update for those of you who care:

Endocrinologist appointment on the 26th of January resulted in me taking a higher dose of thyroid medication, which was already covered.

I went to my primary care physician on February 12th about some other problems (which I will not go into here, just because they’re a little too personal for me to plaster all over the intarwebz) and she’s working with me to try and resolve those. I started 2 more daily medications (between 2 and 7 more pills daily) to try and help with those issues. That brings me up to 4-9 pills daily. Yee haw. One of the new meds has the lovely side effect of exacerbating migraine headaches in patients with a history of migraines. I took the first dose of that medication on Sunday morning, and guess what happened Monday! I got one hell of a migraine.

Now, it’s possible that this is purely coincidental, considering I had only taken one dose of the med. However, this migraine was still going strong yesterday. So back to the doctor I went. We discussed the possibility of the new med causing this headache to happen and be as bad as it was, and decided that we’re gonna try to keep me on the new medication and see how things go. In the meantime, she gave me a shot of demerol (a nice pain medication) and phenergan (an anti-nausea medication) to try and kill the migraine and get me a little relief. She also prescribed me fioricet (which is a tablet that combines a barbiturate, acetominophen, and caffeine) to take when I have migraines, along with a prescription for phenergan (as I said earlier, for the nausea associated with the migraine and the medications). So now I’m on even more pills. Yippee! </sarcasm> (Note: I still have the migraine.)

I go back to see her on Tuesday for an exam and a tetanus shot (yay!) and hopefully won’t get any bad news. Still waiting on results from some bloodwork she ordered from me on February 12th, so we’ll see what happens!

Thanks again to those of you who care enough to read this. I <3 you guys!

“Integrity is telling myself the truth. And honesty is telling the truth to other people.”

There are far too many fake people in this world. I’m finding more and more of them every day in my life. I don’t know why these people pretend to be friends with me or anyone else. I don’t know why they feel the need to spout off Hallmark-esque sentiments with hollow voices, empty heads, and worthless hearts. I don’t have time for fake people in my life. I don’t have the energy to deal with their bullshit drama and their feigned concerns. I have no desire to listen to their meaningless words coming from their forked tongues. And, as such, I will make this statement:

If you do not truly consider me as a friend, if you do not value my presence in your life in any way, if I do not mean anything to you, if you would not miss me if I were gone, then please, stop faking it. I couldn’t give a shit less. You are not that important. No one is important enough for me to dispose of my dignity just to be able to drop their name or hear their voice. I love my friends with every fiber of my being. I would do anything in my power to help, care for, protect, and honor them. If you don’t care about me, then stop wasting my damned time. There’s no place in my heart for those of you who pretend you’re there for me. And, to put it bluntly, I don’t give a damn. The love, devotion, loyalty, and concern I feel for each and every fake person among you could be better spent on those who are true.

Make no mistakes about it– it will NOT hurt me for you to say you don’t want me around. It will not cause me to lose a single second of sleep. I will not shed a single tear over you. I will not allow myself to be affected in any way whatsoever by your lack of gratitude, concern, emotion, or love. You are not worth it. There are plenty of people in my life who love me and care for me. You are worthless if you’re just pretending. And you’re wasting your time as well as mine. I don’t know how much time I have left on this earth, but rest assured that I will not be wasting a single moment on those of you who aren’t deserving of it.

If you’re squirming in your seat right now, if you’re offended because you think I might be talking about you, then that’s your guilty conscience talking. Perhaps it means you need to do some serious soul-searching and be honest with yourself and those around you, including me.

To those of you who are not offended or nervous, you probably don’t even need to worry about this post. I’m most likely not talking to or about you.

Figure it out, make your decision, and get over yourself. I’m already over you.

<3

Sometimes I don’t know what’s worse… Waiting for the answers, or getting them.

Many of you have graciously followed at least part of my quest to find out why I’m sick.  You’ve been understanding, compassionate, loving, reassuring, and supportive.  You’ve been a shoulder to cry on, a rock to stand on, a hand to hold, and a ray of light to brighten even the darkest days.  You’ve shared in my joys, stresses, depressions, and fun.  Those of you who have been there when I needed you, well, you know who you are.  And so do I.  I love, appreciate, and cherish each of you.

I had an appointment with the endocrinologist on January 26th.  At that appointment, he ordered a plethora of blood work, and the results came in today.  It’s some bad news, no good news, and no *real* answers.

My red count is extremely low, meaning I’ve become quite anemic.  My white count is also rather low, with a high percentage of autoantibodies.  (Autoantibodies are antibodies that your immune system creates which attack your own organs and tissues.  These are bad things.)  My thyroid levels are still low.

I’m now taking an even higher dose of thyroid hormone, still trying to push my thyroid into overdrive.  It’s important that I don’t get sick at all, as even the most minor cold or infection could be disastrous for my system.  It’s possible that my low blood count is related to the fact that I was on very strong (chemotherapy-grade) antibiotics for the last month.  For now, we need to proceed with caution, hopefulness, and patience.  I’m not sure I’ll be able to do that for very long…

As always, I’ll keep you all informed.  Smooches!

<3 XoXo <3

Julie Ann

Always remember…

Remember me in the warmth of the sunlight shining on your face, and in the moonlight across your bedroom floor. Remember me in the warm rains of June, and in the cool, crisp blanket of snow that covers your lawn in December. Remember me in the bottom of your coffee cup every morning, and in the comfort of your blanket every night. Remember me with joy every Christmas, and with a giggle every April Fool’s. Remember me in the booming thunder, and in the quiet breeze on an autumn afternoon. Remember me, not with sadness that I cannot be there now, but with joy that I was able to share beautiful moments with you. Do not cry for me upon my death, but rejoice in knowing that I lived. Do not fear for what waits for me when I draw my last breath, but smile knowing that someday we will again be together. Do not weep for what I have suffered here, but smile for the times you made it all worthwhile for me. Do not remember our disagreements, our fights, our anger. Remember instead our laughter, our hugs, our secret smiles. I will always hold in my heart the memories we shared, through good and bad. I will forever cherish you for all the smiles, the tears, the laughs, the sighs, the joy, and the pain we shared. I will forever be grateful for having you in my life, even after our time together is through. I will not weep for losing more time with you. I will fall to my knees and give thanks for having even just one brief moment in time to know how truly wonderful you are. Every moment in my life was made beautiful, wonderful, painful, sad, glorious, and worthwhile because I shared them with you.

Bloodwork results are in…

At the appointment on Monday, October 26th, the endocrinologist drew blood to do some testing on different types of antithyroid antibodies, and a few other things I didn’t really understand.   The results were given to me by the endocrinologist yesterday as i was getting ready to clock in for work.

He went on and on explaining things very well to me. I don’t have his medical eloquence, and for that you’ll have to forgive me.  Basically what it comes down to is this:  I’m sick.  My immune system is shot.  If I get a cold, I’m in trouble.  As such, they want to irradiate my thyroid in order to free up my immune system to fight what it SHOULD be fighting.  Why not operate and just remove it?  Well, because if they open me up and any minute bacterium decide to leech onto me, I’d be, essentially, screwed.  Unfortunately, they can not start the radiation treatment yet until they exhaust other treatment options.  This is thanks to my lovely insurance company.  So right now, they have me on a very high dose of my T4 (which I was already taking) to push my thyroid to hyperactivity.  This will have a few benefits:  it’ll help me lose weight (yay!  No more colossal fat-ass Julie!), it will improve my energy levels, it will make my hair and skin dryness subside, along with a few other positive side effects.  They’re hoping it’ll also make my immune system leave my thyroid alone, but they’re not hedging any bets just yet.  In three months, I go back to the endocrinologist for more bloodwork.  At that point, he plans on beginning the radiation treatments.

I’ll keep you all updated via this blog when anything changes.  To access this blog directly, use http://vapideuphoria.wordpress.com