Thursday, January 19, 2012

The I.V Round 2.

2 weeks on orals. Literally just walked in the door from my check up.
Got the news I didn't want to hear. I was expecting it though.
For what it's worth this round of meds hasn't been insanly harsh but I can't lie that it still sucks.

This is my current list of symptoms that my meds have brought out in these two weeks.
My lyme and 2 co infections babesia and bartonella are all out:
-Chest pain
-Headache
-Dizzy/light headed
-Feeling of a lump in my throat
-Anxiety
-Hot flashes
-Not sleeping
-Ears popping
-Joint pian /knees & hips
-Muscle Pain/ legs & back
-Nausea
-Tummy pains/cramps

You're probably like what the fuck ha. Why do this to yourself, and I often ask myself the same thing...
So the goal is to go on I.V rosefin and oral mepron starting next week. Mepron will bring more shit out so the I.V medicine can kill it. That's the basic science of it.
My doc seems to believe I should only be on the I.V for a month. I laughed naturally..
I bank on at least 3 months then again who really knows then back on orals for a short while.

I DO have some mixed feelings about this though. Because 1. I much prefer i.v or orals anyday. 2. I did very well on i.v. last time even though I was on it for over a year.
The down side is obviously having so sit through an i.v for at least 5 days a week and money and of course the anxiety of what if I became allergic to it...

We shall see how it goes. Just a little update for you..

Sunday, January 8, 2012

Day 3

Day 3 on meds.
Only doing half my doses. It's still hitting rougher than I expected it to..or rather hitting more than I hoped it would.
Secretly hoping I'm immune to all the meds their are so I have an excuse not to enduse myself with pain.
It's a love hate thing. Told it'll be better than the last time, I believe it but something about forcing yourself to go through such tourment is such a mind fuck for sure.

Regardless who's surrounding me in my life I need to realize I'm doing this on my own. Those poeple that support have no idea what my bodies feeling. Learning to rely on no one is the toughest part.

Day 1 was mainly uncomfortable, getting used to the upset stomach and general sick feeling along with the anxiety that comes with every pill ingested.. A waiting game for an allergic reaction mostly.

Day 2 was the same durring the day. 6pm rolled around and my world got flipped upside down. Unable to tell the difference between just a general pms or whether it was my meds kicking in or a combo of both.. Ill go with the later.
It was by far my roughest night in a long time to say the least. The world needed to end at that very moment to appease my needs. Not a soul to care, nor do I really expect them to. We need to be told everything will be ok even when we know it wont be. We want to smile when we are down and secretly hope that someones humor can take away our pains. This is not reality.

Again on my own. Never wanting to be in this place. Im tired of my headaches. It makes me not want to continue the treatment.  A battle of logic and rational reasoning against your own natural will to not want to feel pain.

Missed my morning dose in hopes of good company. Maybe taking them later will ensure a better night for now.. This wont matter when I do the full dose. It'll mean pain and discomfort all day long.
I have nothing left in my life to loose yet I'm still afraid of loosing it all.
Hope is all I'm afraid of really losing...

Sunday, January 1, 2012

Out Of Remission

You may not understand now. You may not understand ever. No matter which way I could possibly get my words out to you they hold no real meaning when the same words hold a different meaning in your eyes.
I can not and CHOOSE not to ignore what  feel. They are real, the pain and discomfort is real. The anxiety is real. What I go through on a daily basis is real whether anyone else chooses to aknowledge it or not.

It's Jan 1st 2012. I called to set up an appointment with my doctor for the 5th. I dread this.
I've been free of any sort of medication, well, since my last post of here.
That time was well spent for the most part. Living was easier to say the least. I may not have been able to travel the world still but It's the simple things you take for granted that make your day worth it.
I was able to meet friends for coffee, meet some new people, travel to places farther than the gas station. I was able to do something like commit to an art show.. ahhaha ... THATS INSANE to think about.. so simple. easy for anyone. Youll NEVER get it what that feels like....

I had ridded myself of all the dark in my life. He braught me down so hard I swore i'd never let any one ever to that to me again. Never ever let anyone hinder any sort of progress you have when it comes to your health because when all is said and done nothing else really matters if you cant stand to live in the first place..right?


Here's to the start of a new and 2nd venture.
A second round of meds. A new fella to tag along.. My only hope is that he can keep up.
It's been drilled into my head so hard that no one will ever understand or want to be around for what I go through, to hold my hand, to sacrafice just as much as I have to. I hate going through this every few months let along willingly participating for someone else.
This one has my heart a bit. It'd be a shame to do this alone again. He still doesnt get it as much as Id love for him to. Slightly Ignorant to the reality of what I go through but I want him to see. First hand. I want this one to understand. <3
 

This one scares me. From day one he's scared me. A 50/50 shot hell make it. I have faith in this one though. It's gotten to the point where it's slightly comical to see who will stay and who will run when it comes down to it and when I get knee deep in this shit.

For all I know I could be wrong and everything will be all good,..... right.. haha
Ill bet my eggs in the other basket to ensure my hope isnt broken though.

Friday, June 3, 2011

5 Weeks Free

It's May now.
I forgot when the last time I posted was.
Regardless, I have been off all medications for the past 5 weeks.
Am I healed?
ABSOLUTLY NOT.
This is more or less like a tiny little break until the cycle repeats itself. And it WILL repeat itself.
For Life.
That's just the way it is.
5 weeks free of all meds is a big deal though when you spend the last 3 years on an off and more specifically the last year and a half on an I.V drip everyday. People can feel bad for you or through sympathy at you all they want, but in reality it means shit unless you been there experiencing that situation knee deep for yourself.

The hardest part is knowing at some point this little remission I guess, im in, wont last very long. Another month at most and then it's back to the grind.
Repeat.
And, even being off all my meds doesn't mean I'm still not in pain.
My number one symptom has always been my migraine/headaches and they're still there with other symptoms that don't really effect my daily living.

I see it as, the meds are supposed to take care of the problem (in simple terms). My headaches have never really improved much ..at all.. so why am I gonna keep poisoning myself. Don't get me worng, it's treating everything else, except my headaches unfortunatly.
This is my life. Currently. Everyday, I worry if today's the day my little remission will pick up and go.
But for now Im just trying to life while I can..

I have been successful in that as well. I've had the chance to put my art a new level, I feel. Got some great opportunities. I have also had the pleasure of meeting some really awesome folks who have inspired me on a level but also because you find that these people are real. Regardless of who they are or what they go through, they are human.
And I am humbled by that.

Wednesday, March 9, 2011

BEAT



The human heart.
My heart.
I feel the beats.
It pulses throughout my body.
Still and awake
I shake.
My whole body shakes.
Shakes my thoughts.
Fast most of the time.
Hard aswell.

Maybe it can't take all the medication.
It hurts.
How do I know it wont give out on me sometime soon?
You can see the beats shake my shirt.
It hurts.
Constant beating in my ears.
Wait
only one ear.
The ear that's usualy
clogged and ringing.
And beating.
It hurts.

You are told you need something so badly.
Medication.
For how long?
It's always uncertain.
They say no real damage should be done.
"You'll be all better in 3 months"
They lied.
and now
my heart hurts.
Is this a side effect?
Doubt it.
I think my body's just giving out.
Pain has become a normalcy.
My heart hurts.

Monday, March 7, 2011

Globus and Formication

In simple terms:
Globus is the feeling of a lump in your throat.
Formication is the sensation of bugs crawling on you.
(Both can be symptoms from my Lyme)

GLOBUS:

The lump in my throat...is it there? MRIs, CAT Scans, X-Rays, and visual exams show nothing. But I feel it.
It's the feeling of hands or maybe just a few fingers pressing just slightly on your throat. Consistantly, 24/7. You know when someone knocks you in the throat, not hard but enough to leave that feeling there for a few minutes and you feel like you just choked a little. Or someone has hands wrapped around your neck but you can breath perfectly fine.  It's a feeling of wanting to vomit, burp, and choking all at the same time.

Naturally, this is a major source of anxiety for someone with a fear of vomiting and a fear that they are having an allergic reaction to everything.

It sounds stupid because any normal person would know if they're throat is closing from an allergic reaction. NOT ME!. How do I know?. I consistantly feel like my throat is closing or closed, yet I can breath. I take deep breathes to make sure. I take a sip of water to make sure it still goes down fine. I'm always checking if I can breath. Stupid? 
When I already feel like I'm choking or can't breath how am I supposed to know when it actualy happends if this is how I feel naturally. Stupid?

This is how I live.
Always checking if I'm still breathing.


FORMICATION:

Bugs. Maybe not bugs just itching. I itch. Mostly at night while I lay in bed when my anxiety from the days stresses set in. After I take my last dose of medication for the night.
Could this be another allergic reaction?
I've taken the same medication for months consecutively. They always say you can suddenly develop a reaction. I'm just aware. More than most.

Constantly checking. Checking for blotches, rashes, hives..any sort of indication I'm allergic.
I just lay there. Trying my hardest not to itch. It could just be anxiety. I could just be itchy. There could be a bug. I could just be allergic.

I'm not allergic.
I've been tested.

But you never really know if those tests are accurate..

Sunday, March 6, 2011

Sometimes We Just Need To...

SCREAM!!!Ok. Let me start by giving a brief overview of my situation before I start this bitch fest. Cool?.
I have Lyme Disease. Simple, right?. Not in the slightest. Everyone, doctors included seem to believe it's an easily treatable disease, however 3 weeks of antibiotics works in most cases, assuming you catch it fairly early. With my situation, I had gotten Lyme when I was just yay big or so. 3 weeks of antibiotics..all is good for the 6 year old. Life continues. May of 2008 my life went out the door. Then that shit was deadbolted. Saw doctor after doctor, no one thought my pains,etc were legit. Even after close to 20 postive blood results + spinal tap blood (That's a mess of a story in itself). About 2 years after that (2010) I found a doctor who treated me all started to look up.
And let me just say, the emotional, mental and physical state I was in at that time was not a good one.
I don't want to get into much detail about that yet...Another day.
This is where my bitching will enter stage right.
I have been on an IV drip for about a year now. EVERYDAY, 7 days a week for 12 months. Plus roughly 3 different oral antibiotics along with that, that interchange based on symptomsn ever few weeks. So at any given time I'm taking four different medications a day. This has become my life.
I have to plan my day accordingly, not the biggest deal though.
My issue is that I've seen progress the whole way through, slight progress, but progress nonetheless with minor fall backs here and there
 When I first started, I was under the impression it would only be about 3 months of treatment. Naturally 3 turned to 6, turned to 9...etc. here I am at 12 and still going strong.
I'm at the point where I'm kind of getting worse again. It's like any little speck of glimmer of hope you thought you had just POOF, disapears. At this point I don't feel I should be retreating. I have lost everything from work, money, friends, personal relationships, hope, and just something so simple as looking forward to future possibilites.

I can no longer look forward at what's to come in my future. I can't live like that or I will be beaten down by disapointment, knowing that when that time comes..I'll probably be to sick to actualy do those things or just enjoy it general. Everyone is off away at school and or working full time. Thats where I thought I would be. Thats where I want to be. Everyone is partying and making some of the best memories of their lives right now.. Me... I am just here. In this same shit hole town. Stuck. With no options until my body decides it's had enough and can
A. Take no more and just die off.
B. Stay in said positon until eternals end.
C. I do a complete 360 and wam bam I pick up where I left off about 3 years ago.

I am here. Not happy. Forced to go to school online because I wouldn't know if I'd be able to make to an actual school every day. I am forced to pass up amazing job opportunites because I don't think I would be able to make it to the city or work everyday. Forced to give up people because I have a terrible habbit of bailing on them with sudden onset of sickness. Forced to pass up good times because in the end, I spend my life stuck here. In this room. My bedroom. I stare at 4 walls. I live behind these 4 walls. These wall hold my secrets. I trust them more than all the friends that used to be in my life. They don't know me now. I don't know them just the same. I don't even think I've changed all that much. I've realized that life isn't all lollipops and butterflies like maybe they'd like to believe.

Each day is a struggle to survive. I struggle to keep moving foward and having that hope. Because like I mentioned, all is well until your health starts to go back down hill.
My body likes to fuck with me. Maybe a sick and twisted game to see who's more powerful. He builds me up, encourages me, shows me some light that the future holds... and then he kicks his feet up on his desk, shows me the worst of the worst and just laughs. Like one of those villain laughs. Here I am, like "damn, I fell for it again".

I am rambling. I don't remember what I wrote maybe 5 minuets ago. Then again that could be my Lymes. But I pray. Im not religous. I don't believe in "God". But I pray when I'm really afraid. I don't think I do it right though. I can't tell if it's working. I can't say it keeps me all that sane either. I feel better when I talk. I don't like to talk to "God" though because I feel when you do that your supposed to expect some sort of merical that you know won't really happen. So I talk to people that are dead. Maybe that's who I'm praying to. So they can do stupid shit like play a song on the radio and make me laugh over the irony of it.. They wont judge me. They wont show me pitty. I don't want to be pittied..I just want to ramble with no interuptions  until I have nothing left and that person can still listen more because they're is always more to say.

I bite hard on a pillow and SCREAM as hard and loud as I can because I cant find a really cool cliff to do that at.

I turn the music up as loud as I can take it and sing even with a terrible voice because maybe If the music is loud enough, I won't be able to hear my won thoughts.

I paint, with no intention other than to make the hardest strokes I can and paint as fast as I can so my mind can focus on "gotta finish, gotta finish, gotta finish" rather than my thoughts.

I read about lives more terrible than mine so I have something to feel better about and part of me can laugh a little at someone elses misfortune for once.

I put on a really good fucking face when people as me how I am doing. They don't know I feel like I'm on my knees almost dragging myself to safty just with my arms when I smile at them.

I have a closer relationship to people that serve me my coffee everyday than the people I'm "friends" with.

*Keep in mind this is just a little taste. I didn't post this so you can feel sorry for me or because I need attention or any that bull shit you all seem to think. This is just a place for me to bitch bitch bitch and just feel a little better for a moment.