Saturday, August 13, 2011

I will never ever let you down.

Here's your warning, what I'm about, and what this blog is going to be discussing.

I turn 24 next Thursday, white, lesbian, female from the suburbs, with more street smarts than book smarts, and more intelligence than self-control. This is my blog, and if you're easily offended by curse words, then I recommend not reading this, ever. Yes, I can execute my feelings perfectly without using curse words, but let me tell you how good it feels to tell the world to go fuck itself when you can barely find the strength to lift your body out of bed in the morning.

I'm a "spoonie" by definition. If you don't know what a spoonie is check out and read "The Spoon Theory." While I can't relate to having lupus, I have 1 confirmed invisible disease, and 2 "pending" invisible diseases. I get told "you look fine" on an almost daily basis.

I'm not censoring myself, so Mom, if you find this blog, I'm sorry for not being a proper lady and keeping these things to myself, but it's more important to me to let other people out there who might be suffering like I am, know that they're not alone.

So what are my invisible diseases? I currently have a solid diagnosis of Narcolepsy with Cataplexy. I've suspected that I've been bipolar for years, but never got it really checked out, or was dismissed as just having depression. Why would I talk about the times I feel good? When it was hypomania I was in heaven anyway, but one month ago, I snapped. I lost it harder than I have ever lost it before, and I should have gone to the hospital. I didn't go. I was in full blown psychosis, but I didn't go. Why? I couldn't tell you now. Two weeks after that I find myself in jail for disorderly conduct. Jail is a horrible place, and I never want to go there again. Ever. The sad thing was that I had already set up an appointment to see a psychiatrist for help, but it was still too far off.

Seeing my new psychiatrist and spilling every ounce of my guts onto her floor and into her ears that I could within an hour wasn't easy, but it was enough. After taking my history, and listen to me jump from subject to subject, she told me that she wanted me to see a neurologist because she suspects that I have temporal lobe epilepsy. Stunned, I walked out of her office with two brand new prescriptions clutched tightly in my hand, I felt both relieved, and angry.

In 2004 I had a head injury that caused me to have a memory lapse of 2 years, but does anyone believe me? No. No one believes me. I had "seizure activity" the following week, but the doctors found nothing conclusive and sent me on my way. It blows my mind that from 2004 to 2011 I have been having what fits the exact description of a complex partial seizure, and just thought they were panic attacks, and then thought they were cataplexy attacks...but no, they're fucking seizures.

If nothing shows up on the EEG's and MRI's that I have coming up in the next few months, I'm going to keep pushing for answers, because now I'm educated on the subject. I know that people who have cataplexy attacks don't feel what I feel, and I know that people who have panic attacks don't feel what I feel.

It's unacceptable, but then again, when you can't describe what happens to you, because every single time it happens you black out, and don't recall what happens, how can you explain it to anyone else? More so when you're told that it's just a panic attack, or a cataplexy attack by a doctor, who are you to argue?

I'm currently on Divalproex also known as Valporic Acid also known as Depakote, and am being increased to 750mg per day. This doubles as an anticonvulsant, and a mood stabilizer. I will be reevaluated in the beginning of September to see if I need  higher dose, or if 750mg is okay for the time being. This isn't the only medicine I'm on. I'm also on Clonazepam, also known as Klonopin 1mg at night for sleep. This shit is highly addictive, and your body can get dependent on it, but fuck it. If it's what I need, it's what I need.

Lets back track to the narcolepsy thing, my first spoon taker-awayer. I'm on Concerta 36mg, but with the combination of the other two, I really believe that the concerta is the only thing that's keeping me semi-conscious during the day. It's such a cycle, a pill cycle, and I hate it. I'm on one drug to keep me awake, one to make me sleep, one to make me not want to choke strangers, or have seizures....and the worst part of all of this is that my life has changed so dramatically in the past month beginning to describe it would take forever.

I've always been a fighter, and I've never been a quitter, my determination has gotten me in trouble before. I'll go until I drop. Well, here it is world, I dropped. I crashed and burned, and the best part is that nobody who isn't in constant contact with me knows that I'm struggling so hard.

I want to tell people, but I'm afraid of back lash criticism, I'm afraid  of the stigmas attached to my invisible diseases, and hell....I don't look sick, so I should just suck it up, right?

Let me tell you how much I don't want this:
I'm turning 24 in 4 days, and my best friend is getting married in September.
I used to be a competitive horseback rider. 
I used to be a roller derby girl.
A BMX rider, and a fitness buff.
I can't stand up for longer than 10 minutes right now before my legs give out from under me. 
I can't drink anymore.
I can't party anymore.
If people didn't know I was on so many brain altering drugs they would think that I was beyond fucked up. Tanked. Sloshed. I can't walk straight, I can't talk straight, I can't remember what I was doing 5 seconds ago, or what I was just saying to you mid-sentence. I just put my car keys in the refrigerator, after falling asleep in the grocery store parking lot for 45 minutes because I forgot to take my stimulant this morning.
I can't go to parties without ruining somebody's time, because they're worried about me.
I have to take my medicines at 10:30pm, because if I miss a dose some serious-ass shit might go down.
Hell, the tags just got removed from my car, and my license was taken away because I'm a danger to myself and others on the road.
I'm forced to wear one of those medical ID bracelets where ever I go, which right now is a constant reminder of the things I can't do, the possibilities of things that might happen to me with no warning. A chain locked around my wrist with my medical ailments that could kill me.

Do you know what it feels like to be so tired in the body that it takes every ounce of your energy just to get out of bed, let alone moving around all day to do the things you're expected to do in a regular life? Do you know what it feels like being at the peak of the "youth" of your life, and having to alter your life so dramatically from one month to the next? If you do, I'm sorry you know how it feels. If you don't know...let me tell you, it fucking sucks.

Jail was a terrible experience, but being imprisoned by your own body's limitations is an experience that I can say without any reasonable doubt is one of the worst feelings I've ever had. Learning your body's new psychical and mental limitations when you used to be the energizer bunny is the hardest thing to adapt to.

Mark my words though, I will never let myself down. I do not want to be treated as a fragile, breakable being. I still have dreams, ambitions, and my determination to be successful is still there, but right now...I'm struggling harder than I have ever struggled before.

My friends tell me they miss the old me that used to drink until the point of black out laughter when I would have a bad day at the office, my parents tell me they don't like how I am on these medicines, acquaintances judge me on the daily "I'm tired all the time too, I must have narcolepsy!" "Sometimes I'm sad, and then sometimes I'm happy, I must be bipolar!" However, I don't get jokes for epilepsy, mostly because nobody knows about it yet. Hell, I don't have an official diagnosis, and my parents wont believe it because in 2004 they couldn't find anything wrong.

I'm starting my first full time semester of college classes on August 22nd. I'm an economics major. It ain't gonna be easy, but one thing I am going to do, is help those who are struggling like me. I want people to know that you can raise up, and do what you want to do. If anything, what you need to do. I want to be an inspiration one day. One day I will be an inspiration. I'll write my story in pieces, while I can still remember it. I'm sick of the stigma, and I'm sick of the misunderstanding. I want parents, patients, and fellow spoonies to have hope. To hold onto that hope, and never let it go.

I'm at the end of my rope, but I just tied another knot, and I'm holding on as tight as I can. Thank god for those rock climbing classes I took years ago.


  1. You've got a lot of guts, Julie. Keep holding on to that rope.

  2. Well said, Keep on fighting and asking questions to the doctors and all you can do is tell your story. Its no one elses but yours. I understand the diseases that no one sees and don't understand how you can be fine one day and not the next. I keeping you in my thoughts.

  3. Julie, I've been living with Narcolepsy since I was 5 years old. I am now 66. I have been on every medication there is, several years ago started Nuvigil, and now am on that and Xyrem. That has been a huge help. Can't afford Xyrem, so you can look into the Xyrem project. Don't know about drug interaction with your other meds. Also had undiagnosed sleep apnea for several years which makes things worse. Make sure you see a neurologist who specializes in sleep disorders who will coordinate with your other Dr.
    This is a shitty deal.