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Not Feeling So Lost And Alone

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I am not sure how I ended up at this forum but am sure glad I did. I will try to give a quick run through on myself. I am 45 years old and just found out a week ago that I have lupus. I have had problems for the last 6 years. The symptoms and pain differ all the time, at least in regards to where it is at. The constant pain is the one identifier I think I have. Recently I had discovered I had a herniated cervical disk and a bulging one. I had been having pain and numbness and tingling down my right arm and leg. I have just finished up with traction therapy and found that the pain and other stuff was not gone so set up for the pain clinic to get shots in my neck. I just figured all my pain was from that and that well all the other stuff i had going on was just in my mind, that is what the doc's told me anyway.

I have had rashes for 6 years now that came when I would be in the sun, I just assumed I was allergic to the sun, was what I was told by a doctor. The rashes have gotten worse over the last 6 years so that now I get them and dont even have to be in the sun. The way I found out I have lupus is my dermatologist took a biopsy of my rash and it came back saying lupus, boy was that a surprise for all of us. I have been tested for everything under the sun because of all the symptoms I have and all have come back negative, even my ANA. I am being retested and am currently waiting on those results. I do have a question though, can you have lupus and have a neg ANA? Are there questions I should ask my internist when I see him after these tests come back? I just feel so in the dark. I am not sure whether I want to cry alot, I try to laugh it off to my family cause they dont understand how I can hurt so bad.

I really am glad I found this forum. I think I will be glad to have somewhere to go to have someone to talk to.
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replied March 6th, 2007
Not Feeling So Lost And Alone
I too have lupus,dermatologist also found it ,it was a no brainer for him the second he looked at me.It is hard to ''laugh it off '' somedays,I do my best though.I am now understanding that ther is many stages after a diagnosis.grief,anger ,depression,bewilderment,etc.It hurts knowing some one has this disease,because often,people look at you like you are crazy,because they can't totally relate,I call it the ''beast''.I used to be in the sun from morning til night,now,it isn't possible,I was a ''cronic gardener'',had the greenhouse and the whole nine yards,purchased 160 acres of land in the fall to keep up with the passion of gardening,now,I don't know what I will be able to due with it.I have my good days and bad,though bad usually out number the good.
I have had weird results,some + some - ,it is frustrating,but I look at each day as it's own experience,I am not a crier by nature,so to let out the emotions ,is hard,I am learning to let them out privately,my kids don't need to see that as well...though it does happen. It is so ...well,excuse me but,it really pisses me off when doctors,family,or friends look at me and say,''ya look okay''....ah,yeah accept for the face lesions,eye(rim)lesions,full face redness-like a sunburn..though I've been indoors all day!
I am in another group( and have dicovered we all have similar cases and yet very different. Have they figured out if it is SLE ,discoid,or another?They were really checking my kidneys today,all this stuff is hard to deal with.I recently started documenting all things,it might help .See about getting into a rheumatologist,I am still waiting for my appointment(mar,22) I am leaning towards ''alternative''medicine,a Dr" of chinese medicine...I don't want to be taking pill after pill,I think''herbalogists''(sp) are up the same alley,hope you have a great support system,send me messages if you like,I'm always willing to talk,just don't be overally vague,because I have difficulty with some memory.YOU are not alone,I wish you all the success,and remember,knowledge is power and there is strength in numbers,I am willing to talk(read) ,listen,and help in any possible way!
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