I literally just wandered into this section for the first time tonight and read a couple goodbye threads related to my arrival.
Wow, can I say I never imagined I'd be the subject of such drama?
Now that I've experienced the friendlier side of the community, I feel comfortable sharing a bit about my personal circumstances and the condition I am so reticent to discuss, as I'd hope it might help people feel a bit more comfortable around me.
The problem is, my condition cannot be labeled. I could give you an extensive laundry list of diagnoses I've been given, which don't even begin to cover half of what's wrong with me. I'm the person whom a top rated double board certified specialist with over 30 years experience said that I was "by far" the sickest patient he had ever seen, my condition was far too complex for private practice, advised my only hope was to go to the Mayo Clinic where a team of specialists top in their field could collaborate on my case but even then, he warned, it's unlikely "the answer" would be found.
I haven't even begun to share the half of my issues here, only the ones that came to mind as most easily mentioned. I've been dealing with a crapload of inexplicable problems for so many years now and I've heard it all, from being dismissed as a nutcase (despite passing psychological screenings with flying colors - yes I have a diagnosis of PTSD due to numerous life-threatening experiences) to being honored as a "hero" for surviving so much and still daring to enjoy life. And everyone says I should write a book someday. Maybe I will.
The luxury I get with many online forums is I get to keep my private life private, no one has a clue just how "different" I am, and I love being able to be treated just like a normal human being. My "uniqueness" is so obvious in real life it's trickier to get something resembling normalcy.
This forum is different because I arrived here in desperate need of a community that can actually support and advise me in living out of my vehicle. And I simply couldn't keep my private life entirely private, because unfortunately many of the good options suggested are unworkable due to unimaginably extenuating circumstances.
Similarly, I once joined a forum about service animals to find out if the assistance of a service dog could improve my life. I shared in detail so the good folks there could help me out. The extent of my limitations were so unheard of that I ended up being accused - by the moderators, no less - of making stuff up.
This is the internet. My life is so unimaginably ridiculous I cannot begin to fully convey it, and I don't blame anyone for not believing me. I've just learned it's generally better to share less rather than more, for the sake of having a shot at some normalcy and for everyone's sanity. That's why I tried to walk the line here of sharing what's relevant and simply stating when something cannot work and declining to elaborate on why.
Finally, it is...often hard for me to talk about such things. Sometimes I can take a deep breath and have at it in one go like this and then I want to disappear because I don't feel I can handle the questions that follow. Curiosity is understandable, but the "monkey in a cage" dynamic is not pleasant. What I most appreciate is just basic support and respect and then we can get on with discussing whatever the subject was anyway. You don't need to understand my life in order to accept my stated limitations; I try to keep them discreet and appreciate it when everyone can just move on like nothing's out of the ordinary.
Indeed, I had thought that's what happened here, until I stumbled upon the goodbye threads.
So I've now shared all this out of an earnest desire to contribute to this community with my presence rather than harm it. I don't have it in me to reveal much more. I feel pretty vulnerable and honestly might not be brave enough to read replies to this thread for a while. I need to be able to focus on my strengths here. Beneath all this is a feisty young woman just trying to make her way in the world and I'd love to continue just being myself around here without this crap getting in the way.
Wow, can I say I never imagined I'd be the subject of such drama?
Now that I've experienced the friendlier side of the community, I feel comfortable sharing a bit about my personal circumstances and the condition I am so reticent to discuss, as I'd hope it might help people feel a bit more comfortable around me.
The problem is, my condition cannot be labeled. I could give you an extensive laundry list of diagnoses I've been given, which don't even begin to cover half of what's wrong with me. I'm the person whom a top rated double board certified specialist with over 30 years experience said that I was "by far" the sickest patient he had ever seen, my condition was far too complex for private practice, advised my only hope was to go to the Mayo Clinic where a team of specialists top in their field could collaborate on my case but even then, he warned, it's unlikely "the answer" would be found.
- I'm the person who arrives in the ER by ambulance screaming and violently thrashing from excruciating abdominal pain, naked and covered head to toe in feces and vomit and urine. Periodic episodes without a cause or common factor ever identified, seeing specialist after specialist after specialist. Eventually learned to manage them at home. They happen more rarely now.
- I'm the person whose monthly menstrual cramps are "like having a baby", in the words of my mother, who delivered three without medication. Everyone who has witnessed it concurs. And currently no feasible options to stop it. I must plan all appointments around it.
- I'm the person whose body temperature will occasionally inexplicably drop to the 95 degree range (borderline hypothermia) in a warm room with blankets covering me, and I actually feel too hot...and only realize what's happening when I notice my nailbeds are blue.
- I'm the person who occasionally gets itchy painful rashes covering up to 80% of my body with no cause ever identified that persists for weeks on end.
- My airways spasm shut when exposed to many common chemicals. For this reason I wear a chemical cartridge respirator (a.k.a. "gas mask") in most environments. Before I had the mask, I could not go out at all. Not even to see doctors. It gives me severe headaches. There is only one kind of mask I can wear - the others contain substances that actually cause reactions.
- Vitamin D causes me severe, bodywide intractable pain. No one knows why. Doctors say it doesn't make sense because vitamin D is supposed to relieve pain. Thousands upon thousands have been invested into trying to find a form of vitamin D I can tolerate, and many painful attempts have been made to try to muscle out the other side, to no avail. And yes, I have a pretty severe sun sensitivity. Light sensitivity in general. Only way I can get about is with 5 different pairs of specialized sunglasses (NOir) for different light settings.
Yes, it took some practice to learn how to drive with all the sunglasses strategically laid out around me and switching quickly without taking my eyes off the road.
With the gas mask on.
- I'm the person who has days where she burns her food to charcoal on four separate attempts in a row to reheat food. Who misplaces her wallet in the freezer and a full hot plate of food in the bathtub. Whose short term memory is so bad that any interaction that doesn't occur in writing is liable to be forgotten entirely. Who still holds onto written records of deeply personal friendships with zero recollection of them.
- I'm the person who, every medication I take orally must be custom formulated because I have severe reactions to so many ingredients it is crucial to only try the minimal number of ingredients possible. Of the known side effects of medications, I frequently experience the "less than 1%" of very severe reactions. This pattern was discovered after many very, very bad experiences.
I haven't even begun to share the half of my issues here, only the ones that came to mind as most easily mentioned. I've been dealing with a crapload of inexplicable problems for so many years now and I've heard it all, from being dismissed as a nutcase (despite passing psychological screenings with flying colors - yes I have a diagnosis of PTSD due to numerous life-threatening experiences) to being honored as a "hero" for surviving so much and still daring to enjoy life. And everyone says I should write a book someday. Maybe I will.
The luxury I get with many online forums is I get to keep my private life private, no one has a clue just how "different" I am, and I love being able to be treated just like a normal human being. My "uniqueness" is so obvious in real life it's trickier to get something resembling normalcy.
This forum is different because I arrived here in desperate need of a community that can actually support and advise me in living out of my vehicle. And I simply couldn't keep my private life entirely private, because unfortunately many of the good options suggested are unworkable due to unimaginably extenuating circumstances.
Similarly, I once joined a forum about service animals to find out if the assistance of a service dog could improve my life. I shared in detail so the good folks there could help me out. The extent of my limitations were so unheard of that I ended up being accused - by the moderators, no less - of making stuff up.
This is the internet. My life is so unimaginably ridiculous I cannot begin to fully convey it, and I don't blame anyone for not believing me. I've just learned it's generally better to share less rather than more, for the sake of having a shot at some normalcy and for everyone's sanity. That's why I tried to walk the line here of sharing what's relevant and simply stating when something cannot work and declining to elaborate on why.
Finally, it is...often hard for me to talk about such things. Sometimes I can take a deep breath and have at it in one go like this and then I want to disappear because I don't feel I can handle the questions that follow. Curiosity is understandable, but the "monkey in a cage" dynamic is not pleasant. What I most appreciate is just basic support and respect and then we can get on with discussing whatever the subject was anyway. You don't need to understand my life in order to accept my stated limitations; I try to keep them discreet and appreciate it when everyone can just move on like nothing's out of the ordinary.
Indeed, I had thought that's what happened here, until I stumbled upon the goodbye threads.
So I've now shared all this out of an earnest desire to contribute to this community with my presence rather than harm it. I don't have it in me to reveal much more. I feel pretty vulnerable and honestly might not be brave enough to read replies to this thread for a while. I need to be able to focus on my strengths here. Beneath all this is a feisty young woman just trying to make her way in the world and I'd love to continue just being myself around here without this crap getting in the way.
