You have every reason to be a %&#*%. I have had lupus for approximately 20 yrs. I have been diagnosed for 10 and I never thought I could make it this far with this disease.
As for your rheumy, imo, not many are that knowledgable about lupus. When I was dxed, my doctor did not even have a brochure on lupus and it is a very large rheumatology practice in a large city. Even now, when I complain of some symptoms, he will say, "I don't think that has anything to do with lupus, none of my other patients complain of that". Then when you read the forums and if you participate in a local support group, you do find the majority has the same symptoms. I feel like the docs don't listen to us very well because there isn't much they can do. Lupus is a difficult disease to understand and it affects ppl in different ways. True, we will all have some of the same symptoms, especially joint pain and horrendous fatigue, but then the symptoms can be quite different. Some meds work on some but not on others. IMO, I don't think lupus should be classified as a disease of rheumatology anyway. Why do we not see doctors that specialize in immunology diseases, since that's what lupus is. The joint pain from lupus is not arthritis, however, you can have arthritis with lupus, such as osteoarthritis and that of course would be treated by rheumatologists. Each appt I have, he asks the same questions; how many times have I had to take prednisone, for how long, and what symptoms did I have" I get so tired of telling him the same thing over & over.
Anyway, there is a book by Dr. Daniel Wallace which is titled "The Lupus Book", which is the best book written about lupus. Dr. Wallace is a long time lupus specialist and one of the best in the world. This book will help you to understand this disease (as much as it can be) more than anything else. This book really helped me and also my husband to understand what I was feeling and what to expect. Absolutely a must have.
When I was dxed, I had never even heard of lupus and didn't have anyone to talk to about what I was going through. I did exactly what you are doing. Turned to the internet and forums. The forums helped me so much. I found that ppl who have the disease knew so much more than the doctors. They can help you when you have symptoms you may not have had before and whether it's part of lupus or not, because believe me, it can change sometimes from one flare up to the next.
Understand completely about family and also friends not understanding when you don't feel good and you are just plain tired. There will be many days when you just don't have the energy and you must lay in bed all day. They will tell you if you get out of the house, you will feel better, if you do this or do that you will feel better or you're getting depressed and on and on. It's hard to ignore it, but you'll have to. Ask them to read up on what lupus is and then they can try to understand, but until they do that, then don't give you advice. No one will ever "get it" unless they have this disease. It's unbelievable how bad it can make you feel and how bad the pain can be. It's so difficult for anyone else to understand because one day we can look great and even feel great and the next day or the next 5 minutes, we can be deathly ill. I moved 300 miles to be closer to my family so they could help out and that was a big mistake. In the beginning one of my sisters would prepare a meal and drop it off occasionally, but hasn't done that in 9 yrs. No one has ever offered to help with housework or anything else. My friends would have helped me more than my family has. Hopefully your fiance' is a good support system for you. It will be tough on him as well, but if he loves you, he will be there for you and the little one. It takes a lot of patience. When one person has lupus, it's really like the family has lupus.
There is so much in the beginning. You will grieve the life you have lost. You will be angry and ask why you have this disease. You will be frustrated because you can't do the things you once could. Acceptance is a huge part of coping with lupus. And it is the hardest thing to do. Estimate it will take about a year or two before you really accept that this is your life now. And. . .. . also, don't ever lose hope, because you can go into remission. Some ppl don't have bad flare ups and others have terrible ones, so you can never tell. Prednisone is a horrible drug, but at the same time, it is a life saver many times and we do not have any other options to get us out of a bad flare up. I used to try not to take it and would wait and see if I could tolerate it until it went away, then I would wind up having to take a higher dose to get it to calm down. My rheumy convinced me it would be better to take it when the flare up start and I could usually take a lesser dose. Some ppl respond well to the immune suppressing drugs and some do not. Plaquenil helps some ppl and some can't tell any difference.
What will help you the most and especially being pregnant, is getting a lot of rest, as little stress as possible and listen to your body. When your body is tired, listen to it. If you're sleepy, go to sleep. Doesn't matter how many naps you take. Take them when you need them. You will learn there are certain little tell tale signs that let you know your lupus is going to flare up. For me, I usually have headaches about 2 days before it flares up and I am more tired than usual and just want to sleep. I have learned the hard way to rest more and to stop questioning myself, such as, "am I tired or just a little lazy?" It's always "tired" and if I push it I am going to pay dearly. Don't think about what other ppl think. Don't worry that your house isn't spotless. Don't worry about not being able to go to the family dinner. You really have to put yourself first. Accept help when it is offered. Pace yourself. Learn what you can do and what you can't do. If you can exercise at all, if no more than walking, then do so. It will help you be stronger and help you during delivery.
I know you're scared of the delivery without epidural, but then again, all deliveries are different also. It has been my experience, having a baby usually isn't near as bad as some ppl say. Some ppl take pain harder than others and some don't see it as pain at all. I think you probably hurt much worse with your lupus pain than having a baby. Most ppl will tell you it's like having bad stomach cramps. And. . . . you know if it was all that bad, ppl wouldn't have more than one. I'm not making light of it, because for some ppl, I'm sure it can be rough, but for the most part, I think most of them will say it wasn't that bad. Your body has a way of numbing itself, especially as our bodies were designed to give birth, therefore it was designed to handle it. For me, it wasn't bad at all and I couldn't have any meds due to a problematic pregnancy. That was 35 yrs ago, but it's something you don't forget. The doctors are not going to let you get stressed out. They will take care of you and there are mother-to-be classes which teach you how to breathe and other things. Lots of ppl have natural births now. Don't worry to much about it.
I know this is super long and I hope I have helped you a little bit. Ask any questions and I'm sure you'll get some answers and definitely it's okay to vent. Someone on here will always listen. If I can help in any way I certainly will. Hang in there, it takes time. I'm so sorry you have to go through this and I do hope with all my heart, you are one of the lucky ones that go into remission.