99.5 pounds

I just weighed myself and I am almost at the milestone that my doctor set for me a few months back.
Wow. It is so weird to see the numbers moving in the right direction yet still feel awful.
But it is what it is.
He gave me some huge encouragement on the phone right now... he said that he is feeling very positive about things he is seeing. I was malnourished before and now -- finally -- with the medical food, I am putting some nutrients into the tissue. My last visit was yesterday and I had trouble walking in there... my right foot was dragging and I had a hard time moving properly. He said the right side of my brain needed stimulation but we have not been able to do any of that because it crashes my brain and vision -- bad thing. It causes symptoms to get worse or new symptoms to rear their ugly heads because the brain swells. I think I have written about what a "crash" is before; the vision thing is something they watch very closely. I lost half the vision in my right eye for awhile which was terrifying. It came back but... yeah. Talk about stress.
So long story short, they avoid crashing me at all costs.
But yesterday, he chanced it because all of his brain tests told him what was needed and they also told him my system was handling things in a good way. (Have I ever written about the type of tests he does to show brain functionality? Not sure but that would be a fascinating post.)
So he adjusted my LEFT foot.
Yes, LEFT because the RIGHT brain is what was faltering. I do not totally understand all this -- it is WAY deeper brain stuff than I have understanding for but HE gets it.
And like magic, my right foot started to behave. I was able to walk much better and move the foot properly. My vision was already dim in the right eye but good news! It did not get worse!
So today when I talked to him, he was very encouraged. I slept the rest of the day when I got home after the appt but my vision did not get worse and symptoms remained the same -- horrible and crappy but no worse.
Which is progress. Yay!
...
Sometimes I wish I was better able to see the progress, you know? Right now, I have to rely on other people... and my doctors... because it is very hard for me to logically evaluate and see things. And for someone like me -- a TECHNICAL writer -- that has been so frustrating. This mess has not been black and white. Just a million shades of gray with nothing being clear.
And the water I am walking through is muddy. I have to trust when I put my foot forward that it will meet the ground and not fall into some hole or onto something sharp.
I have had to learn to live with gray and mud.
And just allow it to be.
I used to get so frustrated and angry ... I kept searching for the magic clue that I was missing that would tell me WHY my symptoms got worse and WHY they got better or went away. I used to keep pages and pages of logs hoping to find the thing I had missed every other time... the truth is that constant change IS a clue.
Symptoms moving from one side to the other IS information.
And I have put all this into doctor's hands because it DOES make sense to him -- it is the nature of the illness and infections I have. That is all. It's a lot but that is the bottom line.
And somewhere along the line, I realized that I could either continue being frustrated - which was not helping me at all - or let it go.
I let it go. It saves me paper.
I still cry but hey, that is NORMAL considering how tough this is.
I still get frustrated but I also laugh.
What else can you do? I mean, I consider it a challenge to FIND ways to laugh and I have written some pretty funny chapters for a book I am working on.
Oh yeah that is the other thing -- I really do enjoy writing now. I have a very funny book that hopefully I can finish and maybe publish.
Well, I am out of energy and thoughts for the moment. Ta.

It never ends, this shit.

Seriously... it really never ends, this shit. I'd love just a one day break from it. Or even a half day. Actually I'd take 30 minutes or ANYTHING.

But... then again, maybe not. It would be horribly depressing to have that one bright spot disappear and leave you in the pit again. At least this way, it is consistently awful.


But that said, I have some incredible angels around me right now -- people who have sprouted wings and help carry me when I can't do it myself. My neighbor? Amazing. He takes me to my doctor appt every week. And he checks in to see how I am doing.... sits a chair out in his backyard where there is warm sun. What a compassionate human.


My other neighbor? I hobbled over the other night because I had nothing left to even make dinner in any way for The Child so I had to ask for help and she was just wonderful. She went and picked up a lovely baked potato and dinner for The Child. So so so sweet.


My neighbor up the street? He started a garden and asked what kinds of things sound good... and then he GREW them! He has loads of organic chard and lettuce and stuff that is *wonderful*. I have been so sick that I have not been able to walk up and pick any so he picks some for me and DROPS IT BY THE HOUSE.


I shit you not.

Angel. Pure angel.

And that's just my neighbors... it doesn't include my Dad who calls me at least 1 or 2 times a week to check in and see how things are.

Or Alan who is holding down a job and the only one bringing money in AND dealing with a very ill "wife" (even though we are not married, it feels like we are). He never signed up for being in a mess like this... taking care of a sick wife and The Child is a LOT for a person to handle. I feel so badly about dragging him through this mess along with me... there's no words for how awful it is some days. Anger and frustration... sadness... we are just DONE with me being sick.

I think the thing that has been the most eye-opening has been The Child ... it feels like she is channeling a 50-year old wise person sometimes.
Seriously. It is the oddest thing to be talking to an 11-year old yet hearing the words of an "old soul" coming out. Very very odd.
She has really tuned in to me and where I am with this.... she is wise beyond her years and incredible in her insight. For example...

My legs hurt so badly right now and are so weak that it is hard to make it up the stairs. This has happened before when my symptoms flare and it is just so humiliating to me. I literally have to use my hands to help crawl myself up the stairs -- falling would be the worst thing ever right now. Crawling up the stairs makes me cry sometimes -- it just all gets to be too much when I cannot even walk upright. She always follows me up so I won't fall and usually by the time I reach to top steps, I have tears pouring down. I turn my face away but... she gently takes both her hands and puts them on my face and turns it toward her. She wipes my tears and says "Mama you are doing a great job. You really are. This is right where you are supposed to be and you are doing great."
I try to smile and finally manage to say "It doesn't feel like I am doing great. It feels horrible sometimes."
She says "Yes but look how far you have come... you are doing a really great job at feeling awful! You are really great at that! And it will get better and better. I want to do a Make a Wish Foundation for YOU -- just think of all the things you will be able to do when you are better!"
What an incredible kid. It cannot be easy to see her Mom in this mess. And that is one big reason why I try so hard to be brave and do the tough stuff... to show her that courage is what you do in spite of being afraid. And that tears will pass through. Crying isn't bad but bottling it all up is. Yes I will get out of this. One step at a time.