lyme vs. monty python black knight

talk about getting my ass kicked...

15 meds. that's right. FIFTEEN.

that's how bad it is right now. yet i cannot help myself from yelling:
"is that all you got? come on you pansy"

in honor of the Black Knight from Monty Python and the Holy Grail.
he had no arms and he tried to KICK the guy...
then he had no legs so he tried to BITE his KNEECAPS.
so.

bring. it. on.

you can either curl up and give in or get pissed off and yell back

there's power in the pissed off.
so here's to The Pissed Off... it is certainly better than being a pansy.
i mean, PSHAW -- 15 meds? HA.
bring. it. on.

It is what it is...

Let's see. Today is July 23 -- I just checked because otherwise it feels like July 11 for some odd reason. Whatever.

So here's the thing: I still have horrible symptoms -- but some have gotten a little better and others have gone away, and still others are worse. That is the odd odd thing about this disease... it's because of the inconsistent mess it causes that ends up having people being put in the crazy ward or misdiagnosed or left to suffer...
Doctors -- most doctors, I should say -- do not have a handle on this. At all. Which means there are people out there suffering... like the ones shown in Under Our Skin, the documentary movie that is now out in commercial theaters. It is accurate. It is current. And it is what they showed to Congress a few months back. My Dad has seen the movie multiple times and attended quite a few of the conferences where they talk about treatments and symptoms and what to do ... my Dad has become one of my most powerful supporters and I tell you, that is an incredible thing.

Here is the web site -- I have copies of the movie here but have not watched it... living it every day is about all I can handle right now:

www.underourskin.com

It is not easy to talk about this. Being seriously ill, that is. It is even harder to listen to someone talk about it. At first I tried to talk but... well, the look of horror on a person's face... the almost imperceptible backing away, the changing of topic, the stress in their voice -- for most people it is just too much for them to take in. It is overwhelming. It is frightening. They want to help but can't. They can't stand to see such suffering. And it scares them to think it could happen to them. Or that the person talking is making it up. Or a lunatic.

I understand all that now -- I didn't before... I was just so desperate to talk that it all spilled out. I don't let it spill out anymore out of sympathy for people... but that is sometimes very lonely. I just don't talk about it -- unless they ask. And even then I always offer the short version and the option of waving the white flag and saying "I have had enough for now." You have to -- it is real lonely sometimes as a result but you have to. There is only so much that a person can handle.

So it is ESSENTIAL to find doctors who are very very good at dealing with and treating Lyme. Essential. I have three of the best now but I didn't for a long time. And my system is so fragile that doctors who do not know what they are doing can make things much worse in trying to treat you. Lyme is a marathon, not a sprint. Normal medications at normal dosages will not work for you when things are volatile and fragile. And it is not just about the crap you kill off -- you also have to help your body get RID of it all or it continues to poison you. One of my doctors explained it like this:
Let's say that one of the nuclear plants has a meltdown and all of the nuclear waste is now bottled up inside the building. One person says "That stuff has to be gotten rid of so let's just open all the doors on a windy day and let the wind blow through and get rid of it all."
Well, if you do that then you kill a bunch of people for 20 miles downwind of the building. Too toxic, too much all at one time.

HOWEVER if you leave everything shut except for one window that you open a CRACK and let that slowly slowly seep out as wind blows, then the environment CAN deal with it... and over time, it starts to slowly get rid of the huge amt of of trash that is trapped in there.
Nudge. That is the key here with this situation and with Lyme -- you have to find ways to nudge things in the right direction. It is slow... but is HAS to be. And it is essential to find doctors that understand this concept. More than that, YOU have to understand and accept it as well. Fight all you want but what a waste of energy... accept. It is what it is. You cannot change the cards you have been dealt but you can handle yourself with dignity and patience and SURROUND yourself with the best people out there. Let them carry you when you just don't have the strength to walk it yourself.

Those are my thoughts for now... am hanging in there. And making progress... which is huge. HUGE! Will give an update on where things stand soon but am out of energy for now.

Burning Cold Bites

Yeah, this BITES. Seriously bites. I started a new medication -- potent antiviral cream. I use one small dot of it -- the size of a small pea -- on the inside of my arm.
That's it.
Do you know how my body is reacting to that small amount?

• I am having serious problems walking because my legs feel like blocks of wood inside, from the knees down. It is hard to get them moving. Stairs are dangerous right now.
• The skin on outside feels the way that it does when you stick your hand into a snowbank -- the horrible burning COLD? Yeah. That is how it feels right now on both of my legs, from the knees down. I cry it hurts so bad.
• It is really difficult to get warm -- and I ache so badly with some serious pain from all this. And I *know* pain so I am not being some lame ass with a sob story -- I've passed 2 kidney stones for God's sake so... yeah. I know pain.
• Exhaustion is beyond words. I sleep and when I wake up, I am STILL exhausted which is a truly awful feeling.

Here's the positive spin (believe it or not, there IS positive):

• If my system is reacting this strongly, then we are hitting the right spots with this medication
• My doctor gave me some exercises to stimulate the left side of my brain -- doing figure 8s with my right hand... writing the alphabet with my right foot. It HELPS.
• My vision is holding steady -- previously I have had it go dark. Lose half of it in one eye. Go dim and blurry. Have blue spots show up. Bursts of light rays -- like what happens when a light is on behind a partially open door in a dark hallway.
• Mentally, I have hope. I feel ... strong. Steady. Hopeful. Despite the pain and feeling horrible, I am doing something. And it SO helps to have my doctors tell me "Yes, we have heard that from other patients... don't freak out because we do understand and this is not worrying us. It sucks but it is not worrying us. Hang in there."

Bottom line: This is not going to beat me. Make no mistake -- I have never been more ill in my life. I am not sticking my head in the sand -- I KNOW I am really ill. But then I remind myself.... I have dealt with kidney stones. I have had 12 surgeries for Endometriosis. I had a BABY.
I know pain and this ranks up there.
But I REFUSE to give in.

What makes this mess the worst and most challenging to deal? Well everything else had a FINITE END POINT.
Pee out the stone? Poof! Pain is gone.
Push out the baby? Poof! Pain is MUCH better.
Surgery to clean out endo? Pain is much better even though is still hurts to heal.

This mess does not have a finite point where I can say "Oh I just have to get there... once I get there it will be better." Everything related to fixing me actually makes me worse on the way. And THAT, my friend, SUCKS.

So here is how we are going to do this: one day at a time. It is what it is... I cannot change the fact that I have Lyme disease, plus Babesia and Bartonella, plus a huge amount of some virus in my system. What I CAN change is how I deal with it... What I CAN do is take it one day at a time and find ways to help myself through the day... through the hours, if necessary.

And one big thing that is helping me right now is HUMOR. That and writing... I got my first check for an article that I wrote. Very cool. So I will give updates here about how badly things are sucking as I go through this. I doubt anyone will read them -- certainly no one with Lyme should. What's the point? The last thing I want to do is read about other people going through horrible shit -- I have enough of my own to deal with, you know?
But... if it provides someone the least bit of comfort that they are NOT ALONE.... well, then walk with me as I do this. You don't have to say a word or post anything... you can just be there.
And that is enough.