MS and Chiari I
So many things are making sense to me now... so many things.
It's rare that I can manage to write all that much anymore, and reading too is slowly but surely becoming more and more... all but impossible. Reading and writing... two things which are at the center of my being.
When I got the MS diagnosis, a lot made sense, and I was simply amazed. As I researched though, and came in (cyber)contact with others diagnosed with MS? Something was still not right. Either I'm the biggest PUSSY to ever have MS, and the most horrible person who ever existed, or MS isn't the main problem.
"MS symptom" after "MS symptom" seemed to be "unique" to me... even Neurodude called me "atypical"... and one symptom after the next I could trace back to having started when I was very, very young ...a baby, in fact.
Now, here I am with this info. I have a Chiari malformation. So, I research it... and day after day I feel like crying (tears of relief), even as I struggle to read ...the "stories" of others with the same thing. Even more so than when I got the MS diagnosis, the Chiari I malformation... IT'S THE LAST PUZZLE PIECE.
Joy. It has made me feel JOY! I finally make sense to myself. It all makes sense. ALL OF IT.
Yes... and then quite a bit of fear. I am getting worse and worse. The only thing which seems to help people with these "malformations" is surgery. Surgery. Fucking BRAIN SURGERY.
Would it be worth the risk? Depending on the day, I'll say "yes" or "no". Worth it or not though, I have no one here. I have no one to help me aside from "RavensWings" ...and this whole surgery thing isn't something a few hours, one day a week, from RavensWings will cover me for.
So, I don't know whether or not to push. I don't know if I should go into my next Neuro appointment and insist that she get moving on hooking me up with another Neuro who knows something more about these malformations. I don't know.
First, they wanted to write it all off as my being "mentally ill". Then, it was all about my having "MPD". Then, it was all about my having "MS". Now, here it is... the beginning of it all. The root of it all. The STEM of it all.
Yes... "The Way Home" indeed.
...and here's the front door. On the other side is Heaven or Hell. It could be either. I DON'T KNOW whether or not to open it.
It really hurts sitting out here on the ground though, and I know that I'm no "pussy" when it comes to pain. So, I best decide soon.
tfuckt, per usual
I've been trying to get in here to post for quite a while, a day or two, maybe, but unfortunately tblog had other ideas about that.
Sorry... I guess.
I'm not dead. Sick as fuck, but not dead.
In other words, nothing's really new.
The Key
So, this month I learned that diuretics actually do help with some of my Chiari symptoms. So, you see, I told you, I was drinking to feel NORMAL.
I'd do just about anything to be able to stop having to use this cane... to see better... and, the pain? THE PAIN???!!! FUCK!!! It has even crossed my mind that I should beg to be allowed to risk one of the Chiari surgeries! More and more, I know that a lot of what ails me is Chiari related, as opposed to MS related. If my problems with balance and walking were MS related, they'd have "resolved" by now, just like a lot of the other MS symptoms did. From what I can tell, my MS symptoms come and go. There are a bazillion lesions, but the symptoms come and go as the lesions appear or resolve. That's why I can see at all. That's why I can feel my hands again.
I need to have these Chiari problems addressed. I need to have a more tolerable life. I need to be able to better deal with the HELL of MS.
Yeah, in this last month I learned that I was indeed born with a lot of this shit. Hopefully, in the next month, I'll learn that there's something I can do about it.
...perchance to awaken.
Yes, there are many, many people in the world who have it a million times worse than I do. I'm aware of this, and it breaks my heart that it's the case. It angers me... infuriates me.
I guess that I just try to "think local" in a way... run my yap about the injustices (aka - "wrongs") I see and experience in my everyday life, as opposed to those many, many going on elsewhere. Maybe, that's the only way I could figure out... the only way I thought I could end up feeling as if I might be making any sort of a positive difference in this world, on any level.
Often though, you can get so lost in the little picture that you neglect to focus on the big one. That can make you seem rather spoiled or heartless... but the same can be said about the big picture too, I guess. Sometimes you get so wrapped up in what's going on elsewhere that you end up letting "your own" continue to suffer.
It's such a tricky line to walk. It's so much easier to just talk about the mundane. It's so much easier to just stay... "blind".
Mystical indeed.
There once was a woman named Terri. She added so much to my life, and to the lives of so many others. A lot of love and a lot of caring poured from her spirit, including towards her Lord, Jesus Christ. She was one of the most beautiful people I've ever met.
It doesn't matter how old Terri would have been. Terri was not all too keen on people knowing her age. It matters though, that today would have been her birthday. It would have been HER DAY.
Breast Cancer took Terri from this world... from me... from all of us.
I would have taken the disease from her... for her, if only she had been able to live in return... to be able to be in her family's life, in the lives of her friends and loved ones, just a while longer.
Please don't ignore diseases. It doesn't matter that you or people you care for don't suffer from them. These diseases, whether it's Cancer or MS or anything else... these diseases NEED to be cured. We're smarter than to let them destroy our lives. We don't need to let them shatter our hearts. We're supposed to be SMARTER than the non-human animals!
I have an idea...
PROVE IT!!!!!!!!! PROVE that you're not a MONKEY!!! DO SOMETHING!!!!!!
My dear friend...
I hope that you're at peace, Terri... that your, perhaps, long night is indeed, at the least, "mystic" indeed.
You'll be loved and remembered, my friend, as long as I can love or remember at all.
About those final questions...
About 6 years ago, I was asked that If I could have 3 questions answered by "God" right before the end of my existence as I know it, what those questions would be. Back then, I answered:
1. What's going to happen to all of my stuff?
2. Was I more evolved, less evolved, or equally evolved when compared to the rest of the people I dealt with in life?
3. Will I be in a great deal of physical pain during the time immediately preceding my death? (Will it hurt?)
Now?
Now, I know that I've already answered most of my questions myself. Be that as it may, I suppose that if I knew that my reality would end in the immediate future, I'd ask myself (aka - "God") the same questions I tend to ask myself almost daily:
1. Was it all worth it?
2. Do you want to let it all go now?
3. Are they worth to you doing it all again for, no matter what the cost?
Maybe in another 6 years I'll be back at a place where I feel like even entertaining the thought of there being a "higher power" who can tell me more about the future, and about the realities of my past and present, than I can already tell myself.
Maybe. Maybe not.
