Wednesday, November 6, 2013

A bad day...

I woke up today sick. Really sick. What I call a "below baseline" day. Everything in my body and mind hurts or feels weird. 

My legs and hands are vibrating. Feels like electricity is running through them, some kind of internal vibration. My head feels swollen or inflamed from the inside out. Like my brain is too big for my skull. I got up to go to the bathroom and had to lay back down again quickly, so dizzy and weak.

Does this ever end? Over 20 years of this shit, and counting.

I got so much to do, so much.

Mentally, having a hard time too. The ups and downs of this disease just suck. You get your hopes up, having some good days or thinking some treatment or protocol is working then bam, you are down again. Fuck this. I hate Lyme.

Again, my mind goes to so much to do. I have over 100 messages to read between g mail, yahoo and Facebook. All people looking for answers. I don't know what to tell them anymore. I want to give them hope but I don't want to give them false hope.

Does anything work? People swear by "A, B & C" but I see the same people here on facebook that I used to talk to 8 years ago on Myspace. Noone is going anywhere, we are all still here trying to figure this out. Only a handful seem to have broken free from the Lyme world.

Should I answer questions anymore? Do I make people lose hope when I tell them my opinions? Or is the truth necessary to move forward to get some answers? Is my truth different from other people's truths though? Maybe I should just retire and be done with the Lyme politics. Should I do Mayday and the Worldwide? What am I fighting for anymore? I think we need more research and that's what we should be fighting for. But sometimes I feel alone in that. When I post about that, everyone argues with me. So why do I put 24/7 into something I stand alone on? I guess because my heart tells me to. And I follow my heart above all else because I believe that is where God put's "His Voice," in our hearts. That little voice that tells us to do this or that, just because we should.

Part of me just wants to retire and let others take over now. But I feel responsibility because I know I have all of you at my fingertips.. I know I can help, I can organize. Everyone is too sick and suffering and it's gotta stop. Kids have this...that little voice in my heart tells me to keep going.  But something is missing. We're like a bunch of rats running around a maze with no clue what we are fighting for. How do we get us all to unite. Or maybe all the different battles and goals are necessary to reach the big one. Recognition of this damn disease?

Yep bad day.


  1. I love you! Bad days have the power to make one want to stop fighting! And yes, you do have a lot to do! I related to everything you said. Know that you are loved by so many! What you do does matter!!! Healing thoughts and prayers to you today!!

  2. The hardest times I have found are when I go from feeling really good to getting my butt kicked again. It is at those times I think to myself, why the hell do I keep doing this? I go back and look at my diary from the last several years and realize that good times last longer, bad times aren't as bad and praise God for the good day I have that I thought I might never have again. Why do I keep doing it? I ask myself time and time again... I think more for others than myself sometimes. I don't think we as a whole realize the impacts we have on other people. I can go back in the years since I have been sick and attribute big upswings in my learning and my healing to a handful of people. You my friend are one of them. Keep the Faith Lisa! This too shall pass. You will get through this and what you do has a positive effect on so many. Following your heart is a good rule of thumb. I think that is where God speaks to us. Hang in there! Hugs and lots of love! I'm a message away if ya ever need to talk, rant or whatever!

    1. Aww Christy that was so sweet. You have helped me plenty of times too friend. <3 And you're totally right about it being harder after having good days. I think that is exactly what I am going through right now and I think that I need to appreciate that I'm having more good days then I have in a long time and hold onto to that. I know many out there aren't ever having any good days. Thanks Christy. <3

  3. Why would anyone argue about needing more research???

    Sure hope you feel better soon!

    1. Thank you Kelly <3 I think a lot of people think that long term abx are the answer...but I know fristhand for some of us it is it seems like half fight for long term abx use.