Newbie introduction

Hi everyone,

I've been lurking for a while and decided to introduce myself.
I am an almost 40 year old "girl" diagnosed with lupus when I was
only 23 yrs. old. I have four kids ages 11,10,9 and 8 (youngest is
the only boy). I have a pretty crazy life with all the kidsa and
adding to it my youngest has a brain injury from having meningitis
when he was only 3mos. old.
I came here to see if any of you have had problems like mine (which
I'm sure somebody has).
My lupus has always been somewhat uneventful. I've had minor flare
ups with arthritis, and fatigue, all over weakness etc. but it has
never involved any of my internal organs so I have been relatively
lucky considering the horror stories I hear.
Back in May I had a wisdom tooth and a molar removed and my life
changed from that day on. I had to be rushed to the emergency room
the night after the surgery b/c I was unconscious. The emergency
room docs told me it was b/c of a percocet I had taken almost 10hrs
prior. I knew that wasn't true but I was in no shape to argue with
them and they sent me home-of course my husband had to carry me b/c I
was too weak to walk but they didn't see that as a problem.
Since then I have been feeling horrible!! I was bedridden for about
2wks after the tooth ordeal. I was so weak, nausea, lightheaded-
always felt like I would faint if I did anything-it was terrible.
Well, three months later I'm at least able to do somethings but
definitely not back to normal.
I saw my docs while I was sick but my rheumy was on vacation and
could not be contacted so I had to go through my family doc.
Ultimately she put me on some prednisone after I had been rushed to
the ER three times. I was on the pred for three days and then I got
my rheumy came back from vacation and took me off of it b/c he didn't
think it was my lupus. He took some bloodwork and I waited almost 10
days and he said I had a little inflamation but not enough to have me
this sick. Then I started with the specialists WOOHOO!!!!
Neurologist-everything fine, put me on Flexeril for muscle headache
which has gotten a little better. Cardiologist-everything fine,
wanted me to keep taking a medicine the hospital had given me b/c I
was in tachycardia when I got there one day but he said I really
didn't need it b/c there was nothing wrong so I stopped gradually.
Long story short, the only thing that has gotten a little bit better
is my headaches. I am still extremely weak, tired and I can't seem
to regulate my blood sugar or being hydrated enough (at least that's
what it feels like).
I feel terrible as I haven't been able to do anything or go anywhere
with my kids all summer vacation so the guilt is KILLING ME!!! (I;m
sure you've all felt that guilt before).
Sorry such a long introduction but I know everyone here will
understand my complaining.
I look forward to being part of this group so far I'm really impressed with everyone's knowledge of this disease-I guess I should be a little more educated since I'm going to have to live with it for the rest of my life!!

Hi Fredsmom, I don't have kids at home but boy I know others can certainly relate to you feeling guilty. Even though I'm sure you are doing everything you possibly can. Yes Dental work or any type or surgery is a no no with out going thru your rheumy first. Some times these doctors are enough to make ya want to bang your head into a wall!
Well I have a doctor appt in the morning so I got to get to bed. I look forward to getting to know ya.
hang in there and keep coming back!
hugs and welcome Carol

Hello fredsmom. I wanted to add my welcome to you. I'm so sorry you ahve been through such rough time for so long now and I'm sorry about the frustrating run around you are getting from the docs. I hate that feeling of being so sick and the docs saying they aren't sure why. Sometimes labs don't always reflect what iis going on. Did you feel better while you were on prednisone? If you did, I wonder if your doc would be willing to put you on a taper dose to try to get you out of your flare. I know a lot about the mom guilt. I have 2 kids of my own and it's so hard when you don't feel like you have the energy to do the things you want to with them. I'm glad you joined us - this is a very supportive group and we're here for you through all the ups and downs of this disease.