Ah life.

So, hm. Positive. Lets tryyy to be positive.

Okay. My stomachs handling the abx much better? Thats...cool. I guess.
I've been sleeping alright.


Well I think that about sums up the positive notes list. Lets get to the real stuff.

Packed up my entire apt into a 10x10 storage unit.
Gave up my 2 year old boston terrier (love of my life) to some family in Daytona...My mom doesn't want to keep her and since I'm moving back home I guess I don't really have an option. And the person I thought would take her hasn't really been there for me so I didn't even wanna bother to be honest.

Oh, moving back home (fun)
My eyes look like hell...having a severe identity crisis
I feel alone, now more then ever. Its scary when you need people the most their no where to be found.

The only people I have TRULY are my mom and brother. And I'm so extremely blessed for that but they have their own lives and can't really just entertain me all the time. (totally understandable)

I'm not all that fun to be around anyway.

Lost a significant portion of my life. Pretty quickly. I want so badly to go back to work and get my independence back and forget this ever happened..sometimes I think I could real easily if my eyes would just adjust and be okay. I can fight through all the other pain. I kinda need to be able to see...

Its weird when I have friends texting me or calling me about their problems. So stressed out, so pissed off over things like their boyfriends, or maybe they locked their keys in their car. Something like that. & I remember times when I would flip out about that shit too. It would consume me. But now when they talk about it and I'm trying to be sympathetic and pat them on the back...and let them know it'll be okay and its gonna get better, sorry your having a bad day. I'm like thinking...I WISH that was my biggest concern in life right now. In the grand scheme of things...that stuff doesn't phase me anymore. It is what it is.

I just wanna be like what makes your life so hard? Why are you so upset? Did you forget what I'm going through? Do you even bother asking...how I'm feeling? Or whats going on with me? I think I'm at a point now where I don't even wanna discuss it anymore. How are youuu. I'm good. Thats it. I just think people forget what I'm dealing with, their so consumed with their own problems why add mine into the mix you know? Maybe if I say I'm okay long enough I'll trick myself into thinking so. Probably not though.

Funny I met a guy my age in the IV room at my doctors office. His mom has lyme, he thinks he has lyme. Dropped 50 pounds in one month...he was smaller then I am. But our conversation consisted of so what do you do? Oh well I used to do this this and that...but now I just mostly sleep and try not to die. And I was just laughing and cracking jokes about things like that the whole time. It was kinda cool to find some humor in this mess. Its good to keep your humor, I'm glad mine's still alive and kicking. I was really impressed with the leather recliners in my IV room at the doctors, not so much with the sounds of nature they had goin on in the background. Birds, and flutes. I really wanted to be jammin out to some kid cudi, or wiz. But I guess thats only suitable for me and not the 90 year old lady next to me. Gotta respect your elders.

I have my 3rd IV treatment on Monday. Can't believe this is what my life consists of. I can't wait to be able to work again. Did I say that already?

There are defining moments in your life...and sometimes I wonder why the hell am I going through this? What did I do that was so wrong? But you can't really ask questions like that. Because nobody does anything to deserve this. Not even someone who may have done "bad things" all their life. I just keep telling myself God put me on this path just because I'm one of the few who are strong enough to walk through it. I've always had an undying motivation to prove people wrong. Or do something people think I can't do. Or to be a perfectionist. Well I'll get through it. I'm just not sure when. And that scares me...but then again, once you've hit bottom the only thing to fear is fear itself. And I won't remain scared.

Panic mode comes and goes, but now it mostly goes. I think I am mourning still over what my life was, and what its become. But its been a hard transition.

90 percent of the people in the world couldn't endure this.

Patience is a virtue

I'm not sure what to say. I don't wanna talk about being sick anymore. People ask what your doing, how your doing...how your feeling...why cant you eat this? or that? Why are you moving home?

I don't wanna explain it anymore.

I wish somebody actually knew what I was going through.

I wish I could find some normalcy.

I wish that light at the end of the tunnel was a little brighter.

I wish I could have myself back. And start over.

Calm down there Panicky Pamela

...Sorry, I always make up names for people. Usually it has nothing to do with their name at all. More so just the adjective I'm using to describe them. Guess that one would be applied to me today. I went through some major emotional battle earlier. Mad, sad, confused, and everything in between. Sometimes I wish I could wake up and shake myself. This isn't happening...is it? Why am I still trying to make sense of it?

You lose so much so quick you can't possibly process losing anymore. It hurts. I had the "Well I'm just gonna move, I'm just gonna get away from here leave everything behind" thought. Of course that'd be running from something thats not external. Wherever I go, it follows.

I watched a lot of youtube videos of fellow lyme patients. It broke my heart, it shattered really. Some people have gone SO long without a diagnosis its become a way of life and now treating it has become as painful as the disease itself. I know when I herx, I freak out...and mine aren't anythingg compared to what these girls go through. It makes me speechless. It hurts my soul. Wish I could just be there at 3 in the morning when they can't sleep and go through it with them. Its mind blowing to think...theres at least 200,000 new people a year...feeling EXACTLY what I do every night, sleepless. You begin to not feel so alone when you think of the numbers but you still wish someone like that was right next to you. I so wish I had someone to relate too.

Theres a girl on youtube named Alisa--probably around my age. Her videos are so inspirational. This girl has literally been to hell and back on her treatment and had lyme since the 4th grade. She's a warrior. God give me the strength she has. I so need it.

I feel so needy right now, but I never wanna say it. I don't wanna let people know I'm feeling vulnerable. I know they see it when my eyes start getting watery (outta no where usually) This bothers me, I've never been one to show my weakness. I don't cry. Now looking at ben and jerrys icecream could bring a tear to my eye at this point because I'm so sick of eating quinoa and plain organic chicken.

My brother has really stuck by me through this thing--all the way through it. People kept telling me to calm down. Don't exaggerate. Don't get worked up, stop being depressed. Go take some benadryl, sleep it off. Not him though. That's my dude right there, my rock. Coming over to watch movies with me, calling me when I'm balling my eyes out, talking about getting a 2nd job just to help me buy medication, going to doctors appointments with me, getting blood tests with me. We went to the book store today and looked at cookbooks for awhile. They didn't have anything for lyme disease but we  checked out cancer/fibromyalgia diets...which are semi similiar. It was pretty awesome to have someone take such an interest in trying to find food I can eat without rotating the SAMEE things day in and day out. I really am grateful, this dude goes to bat for me 110 percent. Anyone pushes me down he's always there to a) pick me up and b) kick them in the stomach.

On an even more positive note--I jogged 2 miles today straight!! I walked the first mile, so total 3 miles without killing myself I feel like I'm making improvement there. Was really surprised in myself. Its important to exercise and keep the limbs all loose and flexible. The left knee I've been getting shooting pains in was reallyy sore when I first started but about a mile into it I stopped feeling it and that made me happy. Def need to keep it up.

Still a little shakey about my LLMD appt on Tuesday--I have so many questions. And so many fears. Just wanna get on a stable treatment plan and knock this ish outtttttt.

Sleep, I miss you.

I read an article this morning from a naturopath/MD in Seattle he said "My HIV patients wanna live...it's my Lyme patients that wanna die"

I think people fail to realize lyme is a fully systematic disease effecting every organ, every inch, every being of your body. What you once knew is slowly diminishing. Some people like to joke about the brain fog moments, laughing is quite a good medicine. I guess I'm just not there yet. It scares me to not remember what I was doing in the shower (which leg I just shaved, did I just use shampoo or conditioner?) Not remembering words. Blanking out. Not taking anything in. Feeling like a stranger in your own body.

I went off abx for 3 days. First day I was like Hmm, this isn't so bad! I actually slept better. 2nd day--I couldn't even see the computer screen. I kept scratching my eyes, kept trying to adjust. Why can't the blur go away!?! I get mad. I leave, I look in the mirror. Ah, I see. The bloodshot glassy eyed look is back. Its been quite the fashion statement for me so far. Not sure if I look like I should be on intervention or celebrity rehab. My hair stays in a messy bun so far on the top of my head that I resemble an overgrown version of Pebbles from The Flinstones. My mom commonly asks "Aren't you gonna brush your hair?" I just kinda look down and shrug my shoulders. I know I look like a mess. I feel how I look. I don't think I could change that at the moment. I try once in awhile--as soon as I get home I just wanna scrub my makeup off, throw on huge pajama pants and an XL t shirt. Super cute right? A little distant from what I once knew...heels, jeans, tanning, hoop earrings, perfume. I miss that too.

I've lost 10 pounds since all this has happened, its in no way something I take pride in. I get the "oh my god don't lose anymore weight your skinny enough you have to eat!" Well yeah, I mean...I assumed I should eat. Eating's good right? I think we covered that in 1st grade, all the major food groups, an apple a day keeps the doctor away, yada yada. I love when people play captain obvious.  Oh you think I need protein? Really? I'll get right on that.

Or I tend to get coached alot on what I should eat and why. "but you neeed some sugar, you neeeeed some fat" You know what I need? I need a krispy creme donut and for you to stop talking. Please.

Sleep is hardly obtainable, reaching out is hard.

Sorry I'm getting off track, back to the being off abx. Its been a few, but last night everything was flaring up. I couldn't chew my food, open my mouth. Stabbing pains in my head. Twitching as I'm trying to sleep. I lay there praying to God "just keep me safe, just help me through this, just let me sleep" tossing and turning. Wide eyed staring into the dark. Jealous of Tila sleeping next to me. Times like these you just wish you had an insomniac best friend. After about an hour of feeling like I had 17 disorders at once I said  to heck with it. And took my Omnicef. (bad badd..) Its weird I'd rather screw up my digestive track then feel this. I had to go off because my stomach wasn't digesting food.

I sound like a 90 year old lady, oh my hip. My leg! My eyes! Shut ittt.

Missing the people I need the most right now. I wont reach out, if you don't need me. Maybe I don't need you either. Trying to stand tall alone.

Please God, turn me into a bird so that I can fly far far away from here. . .

You know that feeling you get when your about to leave home for awhile? You look around alot, you wanna make sure you don't forget anything. You check the shower a few times, check your closet, make sure all the lights are off. I keep doing that. I'm leaving for awhile, leaving here is hard. I love so much what I built, maybe its not much. But it was mine. The thought of throwing everything in boxes and taking steps backwards makes me cringe. I thrive on my independence, my ability to adapt, to be alone...and to be okay with it. You learn to love yourself, and depend on no one. 

With that being said sometimes you gotta bite the bullet, I find that term applies to everything in dealing with Chronic Lyme Disease. That scared little kid in me rises up every now and then "..but I don't wanna, do I have to?" The sole focus of my life at this point is to get better. To be well. To function. To adapt. To learn. To Rise.

So maybe I have to pack up all my clothes, put my material things in a storage unit till I can start this all over again. But you know what? I can do it. They say you never know victory until you've felt defeat. When I open that storage unit someday, it'll probably be one of the most significant moments in my life. It'll mean I'm okay to work,I can have my boston terrier back, I can have "Me" back. It means I survived. I sure am gonna miss the hell outta Tila though...

Its hard to come to terms with the people you thought would be fighting next to you, are slipping. And slipping fast. I guess I could slip too. I could break under the pressure. It's hard to stand alone in something so scary. Its hard to know everyone around you is moving on with their life without you. Their progressing, advancing, getting married, having kids. I wish I could say I had that, or I'll have that someday. All I can do is hope.  

Love is unconditional, it walks in when the whole world walks out.But life goes on. With or without your heart.

At the slightest inclination of a taste of negativity, a stressor, a lie, a back stab...I'm very quick to push it away and keep moving. In this time I choose not to be surrounded by anything that's going to hinder my well being. If you don't wanna deal with me, chances are--I felt it. And I X'd myself outta that real quick. Not because it didn't hurt like hell because in the deepest part of my heart I don't understand it. But because the sadness is too much. 

I'll forever remember the select few people that have been holding my hand through this rollercoaster in its entirety. Not anyone who doubted me. Not anyone who left me. Not anyone who lied to me. Not anyone who looked past me. The encouragement, the support, the positivity. The strength these people have given me to keep moving. Its such a blessing. Every day I'm blessed. 

Grandma, good lookin' out up there. 

What had happened was...

You know they say in the most difficult times of your life you begin to understand what you've been taking for granted all along. Laying in bed, still. Painless. Hearing nothing, complete silence...maybe just the silent hum of your fan and your boston terrier taking in little breaths napping beside you (I wish I knew what silence was again), looking in the mirror without a blur in your vision, being able to open your mouth wide enough to chew. Between checking my eyes in the mirror 30 times a day, and trying not to open my mouth too far to avoid the feeling of breaking it. It all gets exhausting. The pain runs together. The symptoms jumble. Not even sitting still offers relief. Its when I'm still that I feel the most. Exhausted but constantly moving. A quality of life I never once thought I'd endure. But God...I gotta admit, you know what your doing up there. So if this is a shove in the right direction. Well, I sure did get the hint. Game over. Re start.

They...(whoever they are ) also say you tend to find out who really sticks by you, who never has, and who always will. Granted its hard to figure out why tragedy has to occur to really make sense of these realizations but hey maybe people don't respond well to the unknown.

I thought for a long time this would be temporary. Kept telling myself "oh I'll be fine in a few months.." Then there was the 2 failed attempts to go back to work after a medical resignation. The piling of medical bills, rent, gas, car insurance etc. I feel like a failure at times, I tried so hard to stick it out. I tried so hard to trick myself and keep saying it'll be fine. Just keep going. Just go alittle more. Don't give up now, Don't give in. The pain was too much, the tears too much, how can one focus at work when their whole body is reacting in ways they've never felt? How can I take in anything when my brains vibrating? My face is going numb? My foot is tapping constantly? Twitching? Oh, and there goes my vision...just keep blinking..maybe it'll correct itself? Run to the bathroom--pat water on your eyes. Yeah that's it...maybe their just dry?

I kept looking around, I kept trying to find a balance. Hey I can be normal, I can do this. But I'm not, I don't  feel normal. I wondered as I looked at everyone if anyone else had something hidden under their sleeve they weren't sharing. If anyone else was panicking in their head? How can you feel so alone in a room full of people?

How does your life get flipped up, tossed around, and shaken SO hard in a matter of a few months. A life changing few months. You feel the room spinning, each spin your clutching the walls just to hold on to something...but nothings catching you from falling. Then your searching for someone in the room to tell you its gonna be okay, and with each spin those people just keep disappearing.

Like a long, slow...never ending nightmare.

Lyme disease has won the battle so far.

And I have my weak moments.

But I will win the war.

It's do or die

Fight or Flight