update

[acesew]

Hey all.  Hope all are well.  I was just going to give an update on myself.  I went to the rheumy yesterday and he changed my meds again.  Maybe these will do some good.  I also got a copy of my records and learned that he diagnosed me with SLE, Raynaud's, Sjorgens, anemia, and inflammatory blood something or nother.... I am still pretty wore out. I was in the car for 6 hours yesterday along with sitting in the drs. office for 3.  I have also learned that I am photosensitive, so that 6 hours in a  car really did me in.  I am still paying for it.
Well I'll let y'all go.  Just wanted to check in with all of you.  Thanks for everything.
Steph

[acesew]

Thanks heiferly.  I needed that.  It is so nice to at least know what is going on.  If for no other reason than knowing you aren't crazy.  Thanks to everyone for your support.  Hope everyone is doing okay and this heat isn't being too hard on y'all.

[Heiferly]

I'm so glad to see things moving along for you.  I hope you start to get more relief soon!  What a process it is that we go through from getting sick, to searching for answers, to getting diagnosed, to looking for the right treatments ... it never ceases to amaze me the strength that each of us musters up to face this journey day after day!  Congratulations on making it so far along; don't forget to take the time to pat yourself on the back for all the hard work it took to get these answers and get treatment!!!

[acesew]

I pretty much have to take the pain meds daily.  I haven't seemed to be able to get the pain under control.  The xanax is prn for me also.  The rheumy is trying to get it to where i can sleep better.  he had me on 1mg tablets at first and they seemed to wear off pretty quickly.  Maybe this higher dose will help.
Have a good weekend too.

[tonyad]

    I too take the xanax, as well as Klonipin (Both in the Benzodiazapem family).
The xanax is PRN...the Klonipin TID.  My pain med is for when I have the Trigeminal neuralgia, and some of the Spasticity I have...both from the MS.

    have a safe Holiday weekend :0
~Tonya

[acesew]

Thanks tonyad.  I think it is a big relief just knowing what you are up against.  Some of my meds I won't be able to start till Tuesday b/c the rx got left at drs office.  I lucked out on a couple of things...he gave me samples and I had a refill on one I didn't know about.  It is the pain med and xanax that I don't have....the ones that could help me feel better now...oh well.  I'll keep y'all informed.
Thanks and everyone take care.

[tonyad]

    Hi Steph,

      Sounds like you got some REAL answers and quite a few of them at that!
It sounds as though you are relieved by this and rightfully so :0

    Thanks for the update....and keep us updated on your new meds. I hope that
they will work for you.
Take Care,
~Tonya