I'm Rob. We spoke earlier. I was diagnosed with SLE five years ago. Like you, most of us here have a painfully long list of symptoms, as well as other conditions on top of having Lupus. I've also have some bad rashes, although I've never had the butterfly rash on my face. My ankles and the inside of my arms are where my rash always shows up.
"I used to be a multitasker" is a common theme here. A few weeks back, I went to the mall in a town that I grew up in, and know like the back of my hand. I got lost. I thought I had driven my parents car that day, and I spent a couple of hours looking for it in the parking lot before I finally remembered that I hadn't driven their car in over a year, and I had my truck that day, like I do everyday. I forget how to spell simple words, and I simply draw a blank many times when talking to others. I get other symptoms as well-opressive fatigue, joint pain, mouth sores, pretty much the works. And I'm certainly not the only one.
Your Dr. telling you that you have a long road ahead of you means that living with Lupus can be extremely difficult, and you may have many lifestyle changes you will have to accept. Some are fairly easy, like staying out of the sun, wearing a hat, and coating yourself in spf50 sunblock. Others, like dealing with, or eliminating as much stress as possible, can be very hard to accomplish.
Lupus is no picnic, but it's also not an end, or reason to lose hope. Lupus can be controlled, and many, many people live with it for a long time, and thrive despite it. We have members here who have lived with it for 20, even 30 years. Myself-it's been five years since my diagnosis. Although it's been very hard at times, I'm by no means at deaths door. Has your Dr. or rheumo suggested a treatment plan and meds? Many of us take Plaquenil with good results, and there are other drugs that can help keep Lupus in check as well.
We are a pretty laid back group, and there are many collective years of experience here from people who live with Lupus. Welcome to our group. Please make yourself at home.