I'm just as concerned as I am curious about your experiences as well. There are three parts, professional confusion, family confusion, and personal confusion.
I first got to community college at 19 taking their IT: Programmer-Analyst program. I picked up a cough a couple months, and caught every bug to go around. Halfway through the year I got an infection in literally my whole head. My eyes had black circles around them, my face green. My teeth looked like a zombie, covered in scabs and gums swelled and bleeding, with my throat closing. This lasted two weeks before it cleared, this is also when my doctor was first noted of the continued cough. My cough and these extreme cases of small issues continued straight until graduation two years later. Though it seemed to be worse in warmer dry weather, than in colder damp weather.
I started work at our local oil refinery, stationed just down the road from the community college right after my 6 month work term. Which I did most of my time at the college itself because I didn't have internet at home. This is when my illness seemed to get worse. Within the first few months I started coughing and passing increasing amounts of blood. I started getting vocal ticks, and muscle spasms after half a year. After a year I started loosing control of my leg, having to pretend that I wasn't pulling it behind me on my worst days. I am also developing scar tissue in two spots on my scalp. My doctor has now tested me for TB so far, and with a failed test given me some kind of still in testing inhaler with steroids in it to help me breath, also a cream with a steroid for my spots on my scalp. Then falls off to progress towards any kind of diagnoses that returns true until I pressure them for further investigation.
I am now being referred to their significant other at the hospital, who gets a 3D scan of my entire head done. I don't know if the thing was an MRI or cat scan but it looked like the most high tech thing I've ever seen haha. The scan returned to show that my all of my sinus was riddled with cysts. The doctor, in the room with a student, proceeds to tell me that he'd like to take my tonsils out. I ask him how that is a solution to the cysts he's showed me, and my health problems. He literally stands up and walks out of the room, and the student has to confusingly say "well I guess we're done".
Some more time passes and I have to arrange another meeting with my doctor to pressure them to continue looking for a diagnoses that returns true. She has me meet with her other friends around the city, to have more intrusive procedures done. I had been put to sleep and had a camera put down into my lungs to check things out there, came back fine. I had a skin specialist tell me to lay back so they could take a scrape of my scar tissue for sample, and when i felt something wet dripping down my head and asked what it was, they said they were stitching me up. Which kind of made me mad because they certainly didn't ask, more coaxed and lied to get something I would have given them anyway.
The sample taken from my scalp apparently returned true for lupus says my doctor. So they start me on some immune system suppressants and stomach pills to help with my puking. (stomach pills were amazing little orange things from heaven!! They made me able to make at least 1-2 more days of work a week.) I continued this medication until the day I quit work, because it just wasn't working. I continued to get worse. Within two weeks of being off my medication and away from the oil refinery, I stopped coughing, puking and shitting blood multiple times a day, and would only have an orange tinge to my spit. Though my physical body felt absolutely useless.
I asked my work for at least half a year, to find me a replacement before I left. They did not find anyone until I left, they had someone there in a week~. Within a month, I got an email from my department lead asking me to stop by and get some disability papers. Feeling bad that I had left with no income. I felt very good about this, feeling like someone was at least looking out for me.
When I got my doctor to sign my disability papers, she wrote anxiety... After nearly 4 years of medications and treatments and i think 3 years of lupus diagnosis, she wrote anxiety.
Halfway through my illness, when I started missing time and loosing physical ability, my ex and I had broken apart. I was too tired between the few days that I could even get to work, to pay attention enough to what was going on around me.
After finally having to leave work, the nightmare began. She started resenting me, blaming me. I had gone from 190-195 lbs to 145 lbs in a month in a half after leaving work. It got to the point where I had been eating half a sandwich every 3-4 days. I was gauging if I had enough energy to get down the street and back. I could go into more detail about the routines I used to survive this, but that will be getting into other personal history and take the point of this off its rails.
My mother would both find sympathy from public from my lupus, and spread rumors among family that I was full of ****. I now haven't seen my mother in a year, and have broken relationships with both my older and younger sister. Note that these 3 people, for my whole life, were the only things I loved and lived for. I gave them every last thread off my back until the day I literally couldn't or I would die.
The night before everything came back to me, I came home hungry again, to seeing my mother sitting there at the coffee table waiting for me to get back home, with a big snotty grin on her face, and a big hot plate of food under her hands. More happy to watch for the look of depression on my face than for the hot plate infront of her. Saying nothing I went to bed and passed out to get to the next day.
I woke up the next day feeling different. I wasn't feeling hungry, I wasn't feeling sick, or paranoid. I just felt calm. Feeling great, I got up as soon as my eyes opened and went to take a shower. As soon as the water hit me, I felt a hand rest on my left shoulder and a voice in my head that said "You deserve this". And after that I had the words Convergence and Inversion ringing in my ears and literally floating around in my head and vision. I also got an email for a game programming job locally from a random kijiji ad I had posted to help people with their personal computer problems. Within a month and a half I was out in my own apartment working making 1k min a week again and weighing up to 175 lbs.
After that I had been approached by many different groups spiritual, legal and illegal to either help them or to be set up. Also being bombarded by family again and even my landlord nonstop making intrusions into my apartment.
The roller coaster goes on and I could write for days on how Lupus is still taking my life through one of the most intense experiences imaginable, but my main objective here is to relate. What the heck is going on here, are any of you going through just as confusing experiences not just in bad health, but the whole affect it has on your life too?