Welcome Diane!
and we welcome all your 'whining and even offer cheese if you like' lol!  
That is why this group exists;
we all 'get it' and do understand all your aches and pains and feelings of low self esteem at times and all the disability you can go through with this illness lupus... it is a nasty diagnosis to get and you have to have the strength to live with it... sounds like you do actually; as like most of us, you were a very busy and active person in your 'pre lupus life' and those energies and motivating factors that pushed you into your activities then are the same ones that will help you live successfully with lupus! believe it or not!
Unfortunately, I have had SLE since I was about 12 the pros think with my history and labs and presenting symptoms at my diagnosis time;  and I am now heading onto 54 and living as quality filled a lifestyle as is possible and enjoying it right now so there is light at the end of your tunnel too!
I have been through 'it all' when it comes to symptoms and side effects and treatments, so many surgeries, aches and pains and many meds......
Your treatment is crucial! You should have a doctor you feel good with and can talk to openly! IMO the most important aspect of living with a chronic illness is having the PCP in place so whenever an emerg. arises you have someone to call or to meet you at ER or whatever is necessary ATPIT!
I have a website at:  http://clik.to/lupus   and it has all the different angles of living with lupus laid out on different pages... hopefully it will help you....we also have a map there on the right side of the site as it opens... we are all listed on the map and if you will post yourself we can 'see' where you are geographically too... I am challenged when it comes to imagining a state in the US or a city in a different country/continent.. looks like you are from 'down under' by your email addy?... we have a doctor in our group, a very helpful yet very sick one who is also from there, named Lyndal or LPN as I call her... you will find her responses, if she is well enough to write to you, very helpful!
Anytime you have questions or need support just post here and/or contact anyone of us personally by flagging our name in the subject line and we will send you as much support as we can offer.
Re your diskectomy and laminectomy and fusions I can totally relate! I have had 3 major surgeries needed to rebuild my spine and so have BT and DT and yes, it was hell!  I had altogether over 9 months total in hospital:  3 months pre marriage with my husband of 34 years and over 6 months post marriage when my 2 kids, adopted, were just babies! to finish the job.... so I can literally 'feel' where you come from; Re your eyes?  I am having central vision loss right now and have reached the peak of loss I hope but will be at this level now for the rest of my life; both eyes involved and it really hit me hard to go through it! A huge challenge involving my having to change my methods of using the PC, reading novels and driving restrictions!
It affects your entire life and then some so I do understand also, some of what you have gone through with your eye troubles.
Please just put your feelings out here and let us, as a group attempt to answer you and try to help if we can.... as I said we have all been there and done that in some way or another and so most of us do see where you are at and can relate to how lousy you must feel!
But remember too, you have those inner strengths thankfully, due to being type A personality; oddly enough studies have been done and most lupie patients are the 'gung ho' type of people who love to do and to accomplish things and almost always perfectionists to some degree as well as possibly obsessive over some things; you have to learn to live with the situation but without losing your drive at the same time!
There is a 'happy balance' that you will find down the road a bit and I wish you all the luck in getting to it!
It is different for everyone living with lupus, a very individual illness and so no one will be able to relate exactly; but the inflammation and pain and aches and fatigue are generalized pretty much through all patients and we all still get them at times as that is the nature of the illness: chronic, inflammatory, systemic and multifaceted!! IOW?  Nothing is sacred lol!!
Good luck and remember to just ask away in any form you like! whining or not and you will get responses from us!
My hugs for you,
from
Shelagh
http://clik.to/lupus

I was diagnosed with Lup[us in 1993 I had always been a very active
person.. Classical Ballet, Swimming competively, Horse Riding and
Yachting.I was a very happy person with loads of self-confidence.
In about 1998, I started to get aches and pains in all my joints and
muscles along with constant fatigue  My husband eventually left me for
some one youngerr I started to feels as though I was a hyphchondiac! At
last one lady suggested I go to see and Immunoligist and after a few
Blood Tests , I found that I had, at last a name to put on why I was
feeling likeI was. Mind you, ignorance is bliss. I had no idea what was
to come!
I have had 4 joint replacements, 2 fused joints and a Laminectimy and
Disctectomy.I have lost the vision in my left eye and because it
continued to be painful, had to have the whole eye removed and I now
wear a Prostheseis. This hasn't done much for my self-esteem which was
pretty low anyway. None of my family or friends seem to understand my
spcecial needs and, I think, I use the name "lupus" to get of attending
vareious functions.
I have given them all "pamphlets" to read but they don't seem to be
very interested in reading them!
I know, quite well, that I sound as though I am whingeing. That is why
I thought a support programme like this may be of some help to me. I am
not unhappy all the time and it would be quite fun to share the
"miseries" of this affliction and to have a laugh about it. After all,
there are many times when I think to myself, "This would be funny, if I
didn't feel so alone."
Surely there are plenty of fellow sufferers out there who would like to
share heir problems and, perhaps, a chuckle or two about it all.
Hugs for Everyone Concerned
Diane
rwh81505@bigpond.net.au