Wednesday, February 9, 2011

An uncomfortable 3 weeks...

Yes, that is really a box with all my med's and supplements I take not counting the IV drugs. Funny how they don't even fit in the box anymore. lol!

What can I say, the last 3 weeks have been uncomfortable at best.  I came back from DC around the 16th of January, to be honest I can't remember anymore.  Overall it was a good visit, I had made some progress but the nurse assured me this 2nd round of med's would be much harder than the 1st. I wondered to myself if they do that so you don't get your hopes up when your not feeling better. Boy was I wrong! I don't want to say harder because I don't think what I am going through is hard UNCOMFORTABLE... VERY. Not only has this 2nd round kicked my ass, but that white box on the left of the picture cost more than GOLD... for three weeks worth of medication!!!! I almost fainted when I got the total.  Then I took the actual drug "MEPRON", it's the devil. It fucks with your brain, never in my life have I taken mind altering drugs and after Mepron, I'll never need to.

  I wish I could explain to you what it feels like to feel the bugs dying inside my body.  The crazy thing is the worse you feel the better.  Try convincing yourself that it's good that your hands are shaking so bad you have to put them under the table when your in a meeting so people don't stare.  Or the fact that you need a 4 hr nap after work because even when your sleeping the med's are working and it's normal to not feel rested no matter how many total hours of sleep you get.  If you sleep too much everything hurts, not only are you still tired but it feels like there is a hot piece of iron shoved up your spinal chord and the inside of your chest cavity hurts. Even though you have chest pains don't freak out it's just because your body is sore from all the sleeping and there is nothing wrong with your line. Lyme disease is a game your body plays with your brain.

This go around I find it hard to keep my spirits up.  Dare I say it... I'm TIRED of getting up every morning at 6 am so I can go get my drugs every morning which take 2 hrs to infuse. Only to go back in the evening for 2 more hours.  Lucky me it's only MWF but it still sucks.  Oh I almost forgot, TTHSaSu I only have to go in for a total of 2 hrs for some fluids. Lyme is taking up too much time in my life.  I can't wait for the day this line in my chest  comes out and I can get an extra 4 hrs to my days back. PLUS every week they have to change my dressing, my skin around my line is pissed. I'm convinced my first layer of skin has come off with every dressing change it screams bloody murder every time they clean the area. I'm tired of people saying, "You don't look sick." That's the other thing about Lyme, it eats your body from the inside out PEOPLE, you don't look sick because your hair doesn't fall out all at once only a little at a time. If you watch your diet and cut out all the genetically engineered shit like corn, gluten, sugar, and wheat you loose weight instead of gaining the 50lbs everyone talks about because of the side effects of antibiotics. Oh and one more thing, I really miss being able to shower. It really sucks having to take a 1/2 body bath and use a hand towel to wash your upper body and avoid getting the line wet. It's not my favorite thing in the world to wash my hair in the sink and have to ask for help because I usually don't wash it right if I do it by myself. 

I believe I just had my pity party of course only I was invited but I don't mind if your a fly on the wall.  This is the part where I suck it up and through God's GRACE make it through the rest of my journey with a side of humility.

Back to DC this weekend for the beginning of the 3rd round of treatment. I'm not looking forward to the flight up there. The bugs get pissed off so they pester me more than when I don't travel.  I usually fall asleep before the plane takes off and wake up right as it lands. As soon as I get to the hotel I sleep for about 6 hrs on average just to recover from the flight.  I'll leave you with a picture of a hand full of pills.  This is what happens when you forget to take your med's with dinner and end up having to take them together with your batch of  HS (Hour of Sleep) Med's. lol

Sunday, December 26, 2010

It's in!!!

Before my Power Line
After 

It's done! I am happy to report that I now have my very own "Power Line" AND it's purple. As I write this I'm currently on the flight back home to Austin and I can't help but smile because the fight has begun.  It's on Lyme bugs and I'm ready to fight.  The procedure itself was not too bad. There was a little mix up with scheduling but at 9 am I was taken back to the room and the Doctor explained to me what he was going to do.  I then smiled and said, " I know I watched it on YouTube and if you want I can show you how to do it if you give me some piano wire and a mirror." He loved that! They ended up going in through the jugular and the tube comes out from my chest. I of course was being my silly self and I think it helped set the mood for the room.  The catherization nurse was awesome and put Christmas music on for me.  The tech who assisted the Dr. was a Saints fan and I gave him crap because they lost Sunday.  They started prepping me and I panicked for like 2 seconds then I remembered I was not alone and I had the prayers of many guiding the hand of the Dr. At that point I was given the Medicine that was supposed to put me to sleep but instead it made my brain get jumbled up and I swore I saw my thoughts turn into a kaleidoscope and just like that I was back, I heard the zip, zip, zip of the line going into my jugular, a little pressure and vuala the Dr. was done.  I thanked everyone for being so nice and I was wheeled away to recover, but I refused to go to sleep.  I didn't like the medication they gave me to knock me out because it made me feel like I lost control for a little bit and I don't like that very much.

My life is on hold for the next 6 months.  It goes like this, 3 weeks of antibiotics and fluids  then 1 week off. On my off week I fly to DC and get a new antibiotic added to my treatment.  I've started my treatments at a local infusion center here in Austin. MWF I go twice a day for my dose of antibiotics. TThSaSu I go once a day for fluids that help with detoxing  and provide me with electrolytes (I think). So far so good, I feel a little loopy on some days and I'm sleeping now more than ever.  I hope my body gets used to this soon since I go back to work in a week.

The thing is I don't feel so helpless anymore.  I feel like I've got hope for the first time in my life.  I don't like operating on half a brain and I look forward to getting my brain back.  That's what I miss the most...my brain.  The funny thing is ever since the procedure for the Power Line I believe in my heart I will get better.  It's like a higher power was with me at that time and told me so only I didn't hear a thing but my heart and soul know it.  I'm glad I feel that way because I was loosing my way...

FYI: I started this post on my flight back the 22 and just finished it on the 26.  What can I say, I have Lyme brain :)

Thursday, December 9, 2010

FML

I woke up this morning freaking out. I had forgotten about a meeting I was supposed to attend the day before at my other job.  Completely forgot, this meeting didn't even cross my mind once at any point in the day yesterday. I was so mad at myself today. HOW could I forget? I never forget when i need to be in a meeting where other people are expecting me!!  I've been at this job for two months and I fucking forgot! Agghhh it just eats away at me that my memory is shot.  I event wrote it down on my calendar. FYI: I have this meeting every Wed. same time, same place, same people.  I don't want to hear about how it happens to everyone, because I am not every one I am me and I DON'T forget meetings. 

On another note, I've been sleeping 2 hrs everyday after work. Some days I'm more tired than others but I always sleep when I get home.  You would think all this sleeping during the day would keep me up untill all hours of the night, but my mind keeps me up not my sleep.  I can't stop thinking about my life and what I am about to go through.  Some nights I want to scream, sometimes I want to cry, but I don't because I am not allowed to ask why (It's against the rules).  I will be honest though...I'm scared. 

Sunday, December 5, 2010

15 more days

 My Lyme journey started January 2010. That's when I got "THE" Lyme test that came back positive.  It took me three months to get the courage to seek out a Lyme Dr. to help me treat the disease.  4 months for him to retire and another 4 months to find a Dr in another state that I thought would give me the best chance at beating this thing.  So here I am 11 months later about to begin the biggest fight of my life...

In 15 days I will be getting a power line put in. What is a power line? Hell if I know, but I do know it goes in your chest and if I could I would make one my self using piano wire and some leftover tubes from my motorcycle gas lines. Would it be safe, NO but it would be cheep! Here is a link to a video of how one is put it. 

 http://www.youtube.com/watch?v=m7ppMf3JnoE

I decided to start this blog because I have been looking for a way to chronicle my journey as I begin my IV antibiotic treatments.