Friday, June 6, 2014

I Get It

I thought all of the responses to my 6/14/14 question What's New? deserve to be re-posted. As is typical of autoimmune disease and was demonstrated in the comments, the state of our well-being seems to constantly be in flux. There's those blissful times when Sjogren's seems to fade away to nothing, and boy oh boy, we've all learned to cherish those days, haven't we? But of course since we have SjS, our bodies will also occasionally throw us for a loop in unexpected ways. It's just the nature of this dumb stupid autoimmune beast.

When I am not feeling my best and vent about my challenges here on Reasonably Well, your supportive comments help me deal with this very frustrating disease in an enormous way. Encouragement from one sjoggie to another is an incredibly authentic type of support, since those that haven't walked our autoimmune road just don't understand. They may have the best of intentions: they may love us and sincerely want to help us in any way they can....but the fact remains that communication and empathy from another dealing with the same disease is therapeutic beyond measure.

So as you share your struggles and victories here, please know that I get it. I really do. I'm sending those same healing and positive thoughts your way as well, and other readers are doing the same.

Group hug, people! .::sniff::.

Flare :( 'nuff said.
Vickie Spires
at 8:04 AM

Cystitis wah, wah , wah...
at 7:26 AM

Hi Julia - Thanks for the blog. It has been a huge resource for the last several months! And, thanks for asking. I clearly have Sjorgrens and have for 10+ years but also have some other connective tissue "thing" that doesn't quite manifest itself enough to warrant a full diagnosis. I have been on Plaquenil for four years. I struggled during the last year with terrible brain fog and fatigue; a long-term, low dose course of prednisone has worked miracles and let me manage the work/life balance more sanely. Rheumatologist wants to taper it this month and I will keep my fingers crossed! Good luck with your treatment!
on 6/4/14

Hi Hilary, I'm not sure if it gets better or if we get stronger, but a couple of years into the diagnostic process (don't know if they'll ever know for sure with me or if I'll be "undifferentiated" forever) it has definitely gotten easier. For me, my initial fatigue and the stress of not knowing what was wrong at all seemed to cause the brain fog. It lifted somewhat as I found my bearings. I hope it does the same for you.
on 6/4/14

I haven't seen a Ruematologist for almost a year. They gave me some kid at U of Dub and I refuse to teach them. My primary has been treating me, picked up a nasty Diabetic bug from ODing on 100's of mgs of Prednisone, I'm back on metformin. I have another basal cell sarcoma that will be coming off the patch on my head they already took off. I have to go back and have another mam because they found something they want to look at again. And I'm still waiting for the judge to settle my SSI.I followed you on your trip. I have been active leaving commentaries, writing the White House and playing Tokyo Rose to peace loving folks around the globe. Other than that- nothing, I'm doing nothing.
Shara Bingham Mills
on 6/4/14

Hi Julia! I just got off a tapering steroid treatment to get through a flare and then, Bamo! The grass allergy hit and I feel cruddy again!
Bubble Girl:Navigating the world in a bubble
on 6/4/14

Hi Julia, Not feeling particularly energetic, probably due to problems with sleep I'm having lately.... sleep a couple of hours and toss and turn all night long, snatching some sleep here and there makes for a very brain fogged and tired sjoggie. Also the usual, like IBS, allergies and asthma, which are bad in my neck of the woods this year and just trying to get through life one day at a time as best I can. Keep well, good to hear from you.
on 6/4/14

Feeling hopeful. Have been on Methotrexate for a couple of months and I don't ache! Yay! Lovely weather and vitamin D have contributed to my general well being but fans and A/C really irritate my eyes. Very busy season in my job and I actually have had the energy to garden or go for a walk in the evening. I was a bit afraid of our upcoming road trip through the Pacific Northwest down to California but feeling so well I can hardly wait! Thanks for your blog, I found you after my first big Sjögren's crash ( flare ) in January and decided I needed to accept the fact I had a chronic illness and educate myself, and your articles have been so helpful!
Nancy Joyce
on 6/4/14

The last 6-7 weeks have not been fun... My asthma is acting up. You don't ever realize how you take breathing for granted until you have to work at it. Still not seeing any benefits by taking Methotrexate either. Quite worn out from all the company I have had at my house... Pushing myself beyond my own limitations.... Now I am paying for it. Last trip to the doctor I told him about a lump under my arm.... Upon examination he discovered several swollen lymph nodes and I began an antibiotic regimen. Wish me luck!
on 6/4/14

I just started reading your blog (awesome find) (thank you) ... as for me I'm still going through diagnostic stuff. So everyone is comfortable saying I have Sjogren's now (and I've been taking Plaquenil for a few months) and they are still thinking lupus/other connective tissue stuff but time will tell. Recently had a CT scan for ongoing sinus issues and smell confusion which revealed a cyst, so have to go to ENT to see if they want to remove it. The other thing is that I have felt increasingly flustered/fogged/disorganized in the last year, like I get lost in conversations and it's freaking me out. I hate having to investigate every little thing right now bc it makes me feel like a self-obsessed hypochondriac. Does it get better?
on 6/4/14

Hi Julia. The drama that goes along with 2 teenagers in the house is more problematic than my Sjogren's at the moment. Maybe things will settle down once school is out for the summer but I think I am doomed. My sjogrens always gets interesting during the summer months.
on 6/4/14

Been doing surprisingly good. Not managing work/life balance particularly well but haven't flared for ages...touch wood. I still love my long term low dose antibiotic therapy. It has kept me functioning and employed for years longer than otherwise would have happened. I know it isn't everyone's cup of tea but it's worked for me for decades and having gone off it once I will never ever ever go off it again. Thanks for asking.
on 6/4/14

Struggling with Interstitial Lung Disease, which is painful as well as making me short of breath.  Of course.  Lots of fatigue, and having a hard time with what would be a minor cold. Still taking 17 mg of prednisone and 50 mg of imuran - hoping to slowly lower the prednisone and raise the imuran.  Very depressing.  Other SS symptoms the same.
on 6/4/14

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