99 Pounds... still.

99 pounds... still. Clattery insect. Still.
It is way harder to put on weight when you are in this place. I talked with a girl who heads up the SF section of the Lyme group and she had the same problem... still does, even though she is MUCH better now. So I will just keep working at it. But the good news is that I have not LOST any!! Which is HUGE.

More GOOD NEWS: oh yeah, there IS some. Doctor was very very pleased at my last appointment. He did a boatload of brain functionality tests and they were all stable ... he also muscle tested me on the medical food and that is still okay in my system. Then he made two adjustments on my feet and one on my back. Sounds easy huh? WRONG. Up until recently, he could not even make a single adjustment on one toe. That would flatten me -- horribly. Because adjustments made in the body have a HUGE effect on the brain... it's true. Oh so true. The brain is the computer and if you install new software, it has to adjust and integrate it, right? But if the computer system has a bug and things do not work properly then signals get crossed, things don't work, system crashes, etc etc. Same is true for the brain->body connection. I have multiple bugs and they made everything extremely volatile and unstable.
Until recently when we have finally gotten things more stable so I have not been crashing all the time and having things just ... well, stop working.

BIG difference in my emotional stability. Energy. Thinking. Just... everything. And I have been able to maintain this even though each week, he does a tiny bit more to get my body working properly again. It's a shift, a real shift in where things are going. A relief and yet... I find myself anxious at believing it is here to stay.
Doctor picked up on this ... he said that this is normal because for a long time, I got the rug yanked out from under me at the smallest thing... for no apparent reason. I'd be fine then BAM things were horrible. He said I can trust this. That we are nourishing the brain and that is allowing some real healing to take place. And he even mentioned the word "rehabilitation"... helping me regain what I've lost in all this mess. That is for people who are getting BETTER!! Yay!!
So, am learning to trust again. And to try little things, push myself a bit. And of course, keep up with the medical food because that is a huge step in the right direction.

It's a tough thing... but it is also a relief. And I am so ready to slowly gain back my life. When you are in survival mode, you don't care if you've seen the lastest movie.... You just want to find a way to survive to the end of the day. That's all. Nothing else matters. Someone told me this story about a woman going thru chemo... she was in survival mode and needed to find a way to make it through but thinking days in the future was just too much so she would go to the frig and check the expiration date on the milk... and set that as her goal. "I can make it to the day this milk expires..." and that made it all doable. I get that and I have been there but now? It just feels different... like I could go a bit further out than the milk. And maybe, just maybe plan for something a month out?
And THAT is progress. Yay!!

It's a leap of faith, you know? There is one movie that actually showed this leap SO perfectly... I can't remember if I wrote about this before but here it is. It was Indiana Jones and the one with the Grail -- remember the part where he is trying to get through all the tests so he can get to the Grail? There's the test where he has to pick the right spelling of the word so he knows where to step, and he has to bow so he doesn't get chopped, etc etc Well, the "leap of faith" happens when he has to step out into thin air -- he cannot see ANYTHING there to step on - just air. Harrison Ford played this scene so brilliantly... he stops as he looks ahead and sees what he has to do- there is NOTHING to walk on yet he has to go forward. Frantic, he turns around, looks to see if there is any way out of this... maybe someone else to help? Then his head slowly turns forward again when he realizes that no, HE alone has to do this. It's then that all the frantic fight just leaves him and he surrenders to what he has to do. And takes a breath... and finds the courage... and steps. THAT was one of the most brilliant scenes ever done... because it represents how sometimes in life, all you CAN do is surrender and allow yourself to step out into solid air, trusting that the path WILL appear and show you the way.

Wading through the high water as more pours in

At times, I am afraid to go to sleep. Sound weird? Well, it is just terrifying to wake up with some new symptom that wasn't there when you went to sleep. You think, well if I stay up, I can be the guard and keep something new from sneaking up on me.



Ridiculous, I know.

I don't ACTUALLY stay up all night but... I still find it hard to go to sleep. I've been trying to change that because, hello? Sleep is the best thing for me -- not to mention a perfect way to pass the time and NOT be surrounded and aware this mess. And "this mess" is exactly like being in a room where you have to get to the door on the other side and the water is pouring in.... you have to not only wade through the deep water around your legs but push against the force of it flooding in while making sure you keep your eyes on your goal - THE DOOR.

Oh and you have to also not lose your shit in the process. You have to find a place of balance and allow yourself to KNOW - without a doubt - that you will make it through to that door. It doesn't help to lie, by the way -- you know, saying stuff to yourself like "The water is not here and it is NOT cold... or deep... yadda yadda".

It doesn't help at all.

Why? I have a theory... newly formed. When you lie, it is just making yet another obstacle for yourself. I mean, your brain knows there is water and it is deep and it SUCKS. Why not just call it what it is? It doesn't make it any worse -- in fact, I've found that it helps when you say "Yup. This SUCKS and I HATE this damn water and how cold my legs are and how hard it is to move through this crap."

It is what it is. Ackowledging it doesn't make it worse. It actually allows you to just be in it without fighting it and THAT, my friend, is one thing that I am discovering is hugely important.

Extremely difficult, this surrendering thing. It has always felt like surrender means giving up.
Nothing can be further from the truth. Surrender is just allowing the situation to be what it is. Yeah it SUCKS to be here but here is where I am so how can I make this even the teensiest bit less SUCKING? I've found that humor is quite effective. It distracts you and also makes you laugh... exactly what you need when facing really shitty stuff.

Don't get me wrong -- sometimes it takes all of my strength NOT to just let myself give into despair and frustration... I mean, ENOUGH already. I want my life back. NOW please. But I do not have control over that... all I have control over is how I handle things. That's it.

I know I said I'd give a list of all my symptoms but I went on a tangent and ran out of energy. Maybe later. Although, that said, you have a pretty good idea how limited my energy is... VERY limited and it goes quickly.

Terrified

I have a brain MRI tomorrow and I am terrified.

I don't want to get it done but we need the information since it will tell us why my sight has gotten very bad in my right eye. Which, in and of itself, is terrifying.

So much about Lyme disease is beyond words to describe. Having odd symptoms pop up unannounced and randomly affect different parts of your body without any notice is one of the worst things you can do to a person. It keeps you constantly off-balance, almost waiting for the next nasty thing to occur.

So one of the things I am working on is learning how to let go. Someone gave me this analogy: let's say you have a chicken in your front yard, running around. You HATE that chicken being there -- really HATE it. It makes you mad and you yell at it to GET OUT but it just keeps running around. It makes you so mad one day that you go out there and grab it around the neck and shake it saying "GET OUT! GET OUT!"... but now? It can't get out.

You have it by the neck.
And until you open your fingers and let it go, it can't leave.

Which means not holding on to your anger or frustration and trusting. It means surrender.

To me, the word surrender always meant "to give up because you lost." But that isn't really what it means at all... it isn't about losing. It's actually about strength -- the strength of allowing yourself to trust that it will be okay. That things will be okay.

So tomorrow's MRI is about surrender.