Wednesday, June 4, 2014

What's New?

Guys. I feel as though I've dropped off the face of the earth over the last few weeks, and although John and I have enjoyed our vacation immensely, I feel the need to catch up with y'all.

So. What's been going on with you? Several of you have shared with me earlier that you were either scheduled for or contemplating undergoing a rituximab infusion. Others have let me know that they are exploring non-traditional treatments for the symptoms of their autoimmune disease.

Are you well? Are you struggling? Or are you something in between?

Fill me in. I'm all ears.

See? Well, at least I'm ONE ear. And notice the lovely new lupus blotch right in front of it? Ewww. 

13 comments:

Heda said...

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.

Sue said...

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.

Hilary said...

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?

ShEiLa said...

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!

Nancy Joyce said...

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!

annie said...

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.

Bubble Girl:Navigating the world in a bubble said...

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!

Shara Bingham Mills said...

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.

Nicole said...

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.

Unknown said...

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!

Kelly said...

Cystitis wah, wah , wah...

Vickie Spires said...

Flare :(
'nuff said

slp928 said...

I am new to all of this.. I am 37yo and was recently daignosed with Primary SS. It started one month after an IVF procedure. My entire life has turned upside down. I wanted to share that one medicine that has been helping me significantly with muscle pain is low dose naltrexone. It has been a miracle drug for me. ;)
Julia, your blog has been a life saver. Thank you for all that you have put together. - Sonia

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