Hello From Holly!

[Songofhearts]

   Well, I found my way back here finally! 

It looks like you've been on a ning site as many of the posts here date back to 2009 and there's not a lot for 2010.  So I hope I am right to post here!

I have sure missed everybody and I did have a pretty awful year.  BUT, the good news is that I saw several new drs. and I was put on Plaquenil abt. 2 months ago.  The Rhuemy told me that it would take abt. 6 wks before I would feel a difference... IF I was going to feel a difference.  Well I do.  I feel a whoppingly HUGE difference.

I am able to move more freely and with less pain.  I feel more normal than I have in YEARS.  I am also using a product from Isagenix (well two products) and I also am finally back on my thyroid medication.  All these things are helping me so much.  I also haven't used my oxygen in a month!  WOO HOO!

I just wanted to touch base and say hi to everyone.  I would like to support you all with my friendship, my experience and my own desire to learn from all of you...  Kathy, if I am in the wrong spot, please point me in the right direction.  I would like to post to my thread, but I am also wondering if I should just statrt a new one!  lol

So happy to be here, to meet new friends and say "thank you" to old ones.

Lots of love,
Holly        

[Adminஐﻬ]

  ((HOLLY)))
You posted correctly!! Glad to see you back .. yes that Ning site was closing due to them wanting money, no more freebie.
But between here & on FB we have plenty of members hanging wit us these days..
Go to my FB page and start adding my friends over 400 of them http://www.facebook.com/?sk=messages&tid=1512585567823#!/LupusMCTDFoundation

Glad to see you here Gosh you were missed!

[Songofhearts]

 
Well hello!  I don't know whether to start a new topic, lol or what, but I thought I would jump in and say hi to everyone.  It's been a LONGGGG time since I have been back on the board and I'm still not great at finding my way around, so if I didn't answer anyone or offended anyone by my silence, I hope you will be patient and forgiving as I don't know/remember stuff very well! 

Just wanted to say that I've been doing super good all summer.  Most of you that know me know that I've been on oxygen for abt five years now I think.  But, I haven't used my oxygen in six months or so.  I still need it here and there but not 24/7... I'm so happy and hope it continues like this.  I know I said on my last post that the Plaquenil has been like a miracle drug for me and its been great.  I also found out I have had Fibro (no news to me, but to finally get a dr. to tell me that was nice.)  So I've been on a med called Savella for the Fibro... and it has helped my pain levels tremendously.  I tried Lyrica and wow, that helped really well and pretty fast, but after 30 days I had chest pains every day and found out it was from the Lyrica... Bummer.  But the Savella is working great, so it's all good

 I hardly had pain all summer, but just two weeks ago the stiffness, pain, fatigue, etc. all set in.  Sometimes it is soooo hard to feel good for a few hours, a few days, weeks even months and then BAM!  Somebody pulls the rug out from under you, lol.  It's a shock, like, what did I do wrong?  It just happens.  But, I still feel I'm more active now than I have been in the last ten years.  And the numbness of my left arm or a leg!  It just blindsides me.  *sigh*  I just haven't had those type symptoms in awhile!  Well, I love you all and I just wanted to say hi.  Kathy, thanks for sending me this thread so I could find the board again!  I promise I won't wait so long to post this next time.   

Love Holly

[fleamailman]

("...allow me to hug you then..." went the goblin, showing that he had read the post, adding "...think of me as one of your fans where I think of you as one of the heros...")

[Songofhearts]

Hello Goblin lover!  You need to write a wonderful novel as your writing skills are intense and very good!
   I am happy to report that in this past year I have actually been able to babysit my granddaughter!  She is one.  I was sooo scared, but we get along famously since I understand babies and animals pretty well!  Again, babysitting has been out of the question for me for soooo many years and so I feel it to be a wonderful blessing to be able to do so. 

For some odd reason, my seizure activity has increased again though...  I had nine seizures one night (three sets of three small ones or I guess 3 bigger ones?  lol)  Anyway, the valium has helped keep other seizures at bay, but I don't like it that my brain has been feeling a little strange again.  Oh, well!  Whew!  I'm already tired... so that's all for today.  OOOOhhh did I tell you all that I have new pretty teeth now?  Yeah the Sjogrens caused me to have to have all my teeth pulled last October.  (No holiday treats for me last year!)  I had NO TEETH for seven months!  Sooo embarrassing!  But now I have my pretty dentures...  And no pain when I eat cold foods.  Anyone else have teeth decay due to Sjogrens (the drying of your fluids) or from medications that you have to take?  Would love to hear from you or your experiences.  I bet a LOT of us have bad teeth!
   Brush them everyday and floss, otherwise you will turn into a Granny Sycamore (that's what my hubby calls me)!!!  lol  Have a wonderful day!
Love Holly

[fleamailman]

("...I wish there was a kudos button on the board, or at least some way to thank you for your post then..." replied the goblin who had only return now to read this, saying "...even if I turn up occasionally here, a creature of habit I am, so I'm subscribed to this thread now and will read whatever you wish to tell me, also I believe kathy and the others are mostly on facebook these days so you'll catch them there though I suspect that they pass by here too at times...", and with that the goblin wished well and would be here now)