It. Will. Never. Get. Better. EVER.
I could write you a list of things that have gone wrong in the past four years, and your eyes would glaze over and pretty soon you would want to send me to space with Donald Trump (I think that's a good idea, btw, Jeff Bezos).
I suppose the worst thing, for me, was the loss of my ability to write. My cognitive function just decided to take off for Tahiti and leave me behind. Rude.
Writing, editing, proofreading--these are the things I do the best. And I was like some crazed lunatic who suddenly didn't understand that "our" and "are" are not interchangeable like Mr. Potato Head's various body parts.
Communication.
Writing. Editing. It was who I was. It was ME. It IS me and I lost it. Rumors of mental illness, drug abuse, schizophrenia, Donald Trumpetass, and other things began to float in the air. Some people were genuinely concerned. Others were thrilled, because they are trolls and have nasty souls and bitter hearts.
But the cause was none of the above-mentioned. It was a result of severe hemiplegic migraine syndrome exacerbated by IgG therapy. Since I have no immune system, and I could look at the ball pit at McDonald's and die ON THE SPOT, the doctors try to force this on me. They did. I mean, they are doctors. They know, right?
The fact I can no longer string words together without sounding like I'm singing a Bjork song should mean nothing. It's not important that I think there's a cellar in my bathroom--in a house with no basement.
RIGHT?
Wrong. Why would they ignore these horrible side effects? Kickbacks from the makers of the IgG. That's all I can figure. Because at the last infusion I had (in the doctor's office, because at least my second doctor was smart enough to realize I had severe reactions from IgG and needed to be monitored, unlike my other doctor who went to school in the Phillipines and used a megaphone to communicate from across the office) nearly killed me.
I went into anaphylactic shock, my blood pressure bottomed out, the nurse caught it, I lived, I quit IgG.
Now, I still hear that I need it. I should be doing it. I've gone against doctor's orders. But I have the desire to string words together and not speak in tongues. So, I said NO. Some of my Zebra friends (CVID patients are called Zebras, for reasons I will explain at another point) have made some excellent suggestions, and suggested doctors that are in different parts of the United States, and maybe if I get really, really bad I will consider these.
I am at an extremely high risk for cancer, autoimmune diseases, etc., etc., so the IgG is really the only option to help. There is talk of future gene therapy that may help, but that's just talk right now.
So I isolate. I do not go to crowded places, churches, plays, parties.... I do not touch doorways with my bare hands, and I carry small bottles of antiseptic hand cleaner.
I have thus far fought back my desire to carry a bottle of Lysol disinfectant and spray everyone who comes close. I think I might go to jail for that, but hey, the cops spray people with horrible chemicals just for protesting, so really, I should be able to do this. Sick people could KILL me. It's like second-degree manslaughter. They didn't mean to do it. I think.
But back to situational depression. This is where I am. On Thanksgiving I stayed in bed for three days. I got up for "bio breaks" as one annoying person I won't name calls them, but I really couldn't move. I was so sad, so terrified, so so lonely. IT. WILL. NEVER. GET. BETTER.
But some days it does. Because it is "situational," which means it's happening because of the place I have found myself.
I am homeless. Right now I live in a 55+ community and I am that young one. It is rather nice to be referred to as "that nice young woman" because I don't hear it a lot. I'm 52. But they have rules, and even though my family's trust owns this house, I am not allowed to live here because I am not the magic age of 55. They have kindly given me an extension. But that won't last forever. About a month, at this point.
But it's coming up. Homeless. You see, I cannot work in an office. Because no immune system. So I can't rent someplace. And the Social Security department wrote me a letter telling me that their doctor's examination showed that I could lift small things and file so I can still work in a job.
Of course, they completely ignored the reason I applied, which was stated RIGHT ON THE TOP of my application. I HAVE CVID, a genetic autoimmune disorder that means I GET SICK. I can't be around people. Here, let me lift that box you just touched with your germy flu hands and then go home and die.
Oh, they also told me I am completely sane, although situationally depressed. Oooohhhh really?
So what do I do? This is the cliche ROCK AND A HARD SPOT in the rockiest hardest spotty way ever. I have no regular income, insurance, and THEY don't think I'm sick enough to get it.
HOMELESS. But everyone needs a place to call home. Does it have to be huge? NO.
And that's what I realized, as I started researching the #TinyHouse movement. Why do we need these huge homes, that drain our resources and help pollute our environment and crowd our already struggling earth. Why do we need all these "things?" These things are just "stuff." I have stuff in two storage sheds and at two of my sister's houses. I'm not sure what is where. And every day I get up (well most days) and I live my life, and I don't even remember I have that "stuff." Which is a good thing, since I have no idea where it is really, but that's not the point.
It's stuff. And we don't need it. We can minimize. We can live without a HUGE MORTGAGE that requires us to work hours and hours and be tied to a house. We can live debt free and have a much larger life than if we have a large house and a small life.
I choose that.
#TinyHouse #TinyNation #TinyHomes #TheBigTiny
