A new one to add to the list...I have lupus

Well, as I mentioned in my last post, I finally had my Rheumatologist visit 2 weeks ago.  Of course I had everything ready to go the night before - I keep these packets on hand with all my current meds, all my past meds, all my current/past treatments, all my doctors, family history, diagnoses, surgeries/procedures and symptoms.  From my experience Doctors LOVE it because I just highlight each section title and bullet point everything - its really easy for them to read and they get a better idea of the whole picture - especially things ive tried and they havent worked....so they can see how long and painful the struggle has been.  So of course I forgot this packet and all of my recent CT/Ultrasounds, etc.! I started freaking out because lately my memory has been so aweful I knew I couldn't recreate everything that was on that list and I knew I waited 5 months for this!  So in any case I did my best to draft it down while I waited, but she did the physical exam as well as listen to all of my symptoms etc.

She definitely agreed with the Fibromyalgia diagnosis and the CFS, but also thought I may have some arthritis and wanted to redo some blood tests as well as order some new ones, and get an Xray of my pelvis for arthritis in my SI region.  Well this was a Wednesday so she told me to call her the following Friday to discuss.  So after that loonnngg week and a half I called - go no response - called again, still nothing and finally left an after hour message - nada.  I was already soooo nervous (even though i really thought that just maybe she may find a little arthritis but that's it because I'd already had most of the big tests) - now I had to wait out the weekend.  Well Sunday night, I was outside and came in and had a message from her saying she was so  sorry she didn't get back to me and most of the tests weren't very concerning but there was one she wanted to talk to me about but she wouldn't be in until Tuesday - ugh...first when do doctors call with results at 7:30 on a Sunday night??? Second...two more days of torture!!

So I called yesterday even though she promised to call to make sure she had all of my numbers....then 5:30 rolled around and I thought - again??!?!!  Just then the phone rang and it was her. So of course I'm expecting to hear about the x-ray which I already know I have SI dysfunction and arthritis in my knee and a bit in my jaw so that wouldn't suprise me when she went straight to the ANA IFA test.  For those of you who don't know...the ANA blood test is a test for autoimmune diseases - the anti-nuclear antibody test by indirect immunofluorescent assay - some fancy words for a specific way of looking for autoimmune disease markers.  I had one done in March - just a plain titer and it was a little elevated but within normal limits, but apparently the IFA is the better version of the test.  Well this time it turned up positive.  It was in what she considered the middle of the results....not extremely high but definitely high and positive.

So what does this mean? My doctors and family have thought for some time now that I may have an auto immune disease because of all the different organs that have been affected and how many surgeries i've had and things I have been diagnosed with.  Just - after it came back last time - I was relieved.  Everything I have really sucks and is painful...but it's never going to hurt me or kill me.  I just have good days and bad days.  But now all of a sudden - not that it will happen, but things that have already been affected by previous surgeries/conditions like my heart, liver and kidneys are at risk...my organs are at risk.  A lot of people with lupus live a full life, but when their time comes, pass on from complications of lupus. Well Crap...crap crap crap.

On the plus side, she thinks its on the early side of things and everything is just being made to feel worse because of my Fibro and IC flaring.  She's starting me right away on an anti-malarial drug, when started early on with a lot of young women can bring the lupus to a slow progression and save any attacks on the organs themselves so I'm very happy to know this.

So now, I let my regular doctor know and told her what the Rheumatologist said and the medication she put me on and now in 2 weeks my doctor blocked a chunk of time to meet with me and talk about the diagnoses and my current medication list which is fairly expensive.  All I know is what keeps me able to work is the Soma 3xday and the Norco 3xday ( which I usually cut in half and spread out).  I actually went off most of my pain meds for almost a week last week to see what my real symptoms felt like (as I was working from home) and didnt realize just how much joint pain I had.  I also realized there's no way on earth I'd be able to work if I didn't have my meds.  I was in so much pain, was so stiff I couldn't get up and by afternoon was horrendous and absolutely couldn't sleep.

I am so nervous now that shes going to want to change these meds so now I've got 2 weeks to worry about that on top of everything else.  The savella has started to help with more of my pain in the extremities and the Celexa (only 10 mg at night) helps me sleep and level out my mood.  I'm decreasing the tramadol and only use the valium after sex now.  So I really am reducing these on my own.  I will just definitely have to see a specialist about medications if she doesn't want to prescribe them anymore...I Cant not work.  I also can't sit around or lay in bed all day in pain.  That may not even be what she wants to discuss, just so freaked out right now in general I guess.

So anyways, I'm trying not to get too overwhelmed....I've just always kind of expected the diagnoses I've gotten in the past and this one hit me like a ton of bricks.  I've got to do some more research about it in general as I haven't told anyone but my doctor yet - like my family and boyfriend need one more thing to worry about.  Anyway, sorry if I'm more Debbie downer today, but wanted to let you know how it went.

Trying to stay positive and knowledge is power so I'll feel more in control when I know and understand a bit more :)  Have wonderful weeks everyone!