Saturday, December 28, 2013

Tell Me Everything


Let's use my Christmas cups before I pack them away till next year. 

I've been blabbing on and on and on about myself for ages. I think all of the chocolate that I've been snarfing has made me far too narcissistic. But I think I'm finally emerging from this sugar daze and I miss hearing from all of my sjoggie friends. Want to join me for a cup of coffee? Tea? Hot chocolate? You do? Oh, good.

Well, then. C'mon in! Don't mind the clutter around here. Pull up a chair. Pour yourself a cuppa.

So. How are y'all? Did you survive the holidays? How are you feeling? And I don't want to hear you say, "I'm just fine." Guys. You can't fool me. Really. What's that sjoggie body of yours up to these days?

I want to hear everything, so pass me the coffee pot and start talking.  

11 comments:

mcspires said...

Sipping a peppermint mocha as I type :) I have been SOOOO tired lately. Chalking it up to just general holiday stress. Tried some Gabapentin for TN but had major brain fog issues. Weaned off of that, took Christmas Eve and Christmas off, and started Cymbalta on the 27th. Not doing too bad on it. Made HUGE mistakes all over the place on the Gabapentin. One was on airfare for my son - booked tickets for the week before Thanksgiving instead of Thanksgiving. That one ended up costing me $1,000 - talk about stress. :( And thanks for asking. I don't usually talk to anyone other than my hubby about this, and I think he gets tired of hearing it.

Annette said...

We're in the Great Icestorm area and we, and our adult kids, had no power from Sunday morning until Christmas Eve. You should have seen me wearing 3 layers of pants and 6 layers on top. I was sleeping with flashlights is my pockets.
Christmas Day was lovely at my sister in law's place complete with a little fairy princess and an engineer, with old time toys like pick-up-sticks and Jenga.
The cold was bad for sciatica so meds made dryness worse. Now recovered and flaring a bit. Yesterday was a good day not to blog - felt so bad.

Your Christmas looked like a classic. I'm going to get shortbread to go with that hot chocolate you offered

Julie said...

Things have been extremely challenging, physically, more so than most of the past 29 odd Christmases of having chronic illness.

To not bore everyone completely, my RA/Sjogrens is flaring badly, and found out that the Rituxan every 4 months is not only no longer working, but I have more joint damage on xray. My sed rate and CRP are the highest they have ever been. I have failed 8 other biologics for RA, and now I have started what is the worst type of flare for me: percicarditis. So, I am trying to avoid being hospitalized, and IV steroid pulse doses and IV pain control. I have been ho ho ho-ing up, on 50mg of prednisone, each day, to try and hang on through the holidays.... We have our youngest son home, for 2 weeks, and soon being joined by oldest son and his wife. They are the BEST medicine and are used to an oompaloompa couch potato mom. And bless my hubby for standing by me, through my adulthood of RA/Sjogrens, with its extrasystemic touches and main disease features they have "graced " me with.
I started xeljanz, the newest RA med, and my last med to try..for now.

Fingers crossed, girls, that 2014 will be a healthier year for all of us.

Julia, I hope you don't regret asking how our holidays went, after reading my sad sack tale! lol

Heda said...

Move over and pass the coffee pot. Must be the season because I too have been flaring badly for over 4 weeks now. Just can't seem to throw it off. Still functioning though (if you can call it that) and enjoying several rounds of house guests - I'm close to the airport and have a very comfortable spare room! Have managed to not cook at all as completely beyond me at the moment. Luckily it's summer here so the only two meals eaten at home with guests were cheeses, cold meats and salads. Am learning that visitors are surprisingly happy with the simple things in life and what little I can do for them. 2013 was going to be my year to work on my health and I did make some headway. Saw an immunologist in November and will be getting those results in the New Year. I'm hoping to lose my diagnosis as a coeliac which would give me one less thing to worry about. All the best for a happy and healthy New Year for all of us.

Shara Bingham Mills said...

Just woke up. I've been waking up four hours after my pain pills wear off. I guy on a bike hit me in the main intersection in town on Christmas Eve. Been waiting for the police to come pick me up for a hit and run. Didn't want to ruin Christmas. We waved at each other giving the universal I'm okay, go ahead and take off sign but, who knows what evil lurks behind those cameras. We wouldn't have had a Christmas if Sandra and my kids didn't function either. They made my Christmas. I've been eating Imodium two or three times a day because of the chocolate and cookies I'm not supposed to eat. Everyday the U.P.S man brings something that didn't get under the tree and next week we will spend returning things via UPS again. My daughter colored my hair and found another Basal Cell Sarcoma that Dr. Voss didn't find on her way out of my insurance so, as soon as the Dr. Chins office is back into full swing, we will be making calls to find out who will accept my Washington Apple Insurance. We all watched your house light show Julia and once again, you win the prize. It was delightful. I have been praying that the snow stays away from me and the family this year because the snow is laden with heavy metals from the Fukushima melt down. Before Christmas I found myself yelling at a runner, " Do you even know what is in the rain!" Like some crazy person. I scared myself. What's next? I had a much funnier vision of myself when I finally succumbed to Alzheimer's. And finally, I have been trying different spring heeled shoes so when somebody wants to talk about that all day, I have some advice for you. My coffee is getting cold. I need to get a warmer.

Shara Bingham Mills said...

Julia, did you read the fantastic discovery of 6 genes attributed to Sjogrens. And they are figuring out RA things everyday. Honey, have they ever considered Gold treatments?

Julie said...

I am pretty sure that all of our rheums' phones will be ringing off the hook, once the holidays are over! So many of my RA/Sjogrens/lupus friends are barely hanging on, but that is not much of a surprise.

Anonymous said...

This time a year ago, I was perfectly well. Then 2013 arrived and it's been downhill ever since. In late winter I developed a sore tonsil only on one side. I was very pale, tired and cold all the time. I noticed that the skin on the back of my hands looked like crepe paper. Then my sinuses seemed to dry up on me. That all finally went away until April when my tonsil swelled up again and I developed an earache along with stuffy dry sinuses. My dr put me on antibiotics for a sinus infection. Then I developed a sore spot under my jaw. Saw my dentist, ent and oral surgeon all who said everything was ok. Things went away until April when I was diagnosed with breast cancer and operated on in May . I had a good recovery and my weird symptoms went away for awhile. Then I developed a burning tongue, then dry mouth. Things are getting rapidly worse. 6 months ago my eyes were fine. Today I have no tears and simply typing this post is hurting them. My rheumy has never seen things progress this fast. My Evoxac which used to help my eyes doesn't seem to be working anymore. I am terrified as to what happens next.

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

Not too bad thus year as I learned how to pace myself better than last year.Still had some dizzy spells but not daily. Summer is my time to be dreadful. Heat and I do not mix. Add the sun on top if that and I'm toast.
Sjogrens has made it so I do not sweat. And I'm Sun sensitive. Yikes and I supposed to go to Maui in February. Umbrellas and UV clothing will be my friends.
I joke about buying a summer house in Alaska. Lol

Anonymous said...

I have to say that with fairly recent Sjoggie diagnosis (2yrs), I've had to make major changes to keep flares at bay. I am not working, and still had to spread out my holiday season preparation over months. But I gave myself permission and told myself it's okay to go snail slow - at least I can go slow. When I needed to rest, I made certain I did not push through, I rested. I'm happy to report that I made it! No flare post Christmas which was my goal. These past couple of years of finding my new normal and adjusting has been an on going process, but I've made progress. Real progress. And that feels good. Now to pack it all away! That's waiting until the New Year.

Anonymous said...

I think I may be the "newest" sjoggie on here. Was just diagnosed the day before Thanksgiving....feel like I have entered a whole new world, so thankful for the internet! According to my rheumatologist (and seems to be verified by the stories I've read online), I am an oddball. My diagnosis came about because a blood donation turned up an abnormal test...more blood draws followed with my regular doctor and further confirmation of an autoimmune issue. Combined with the dry eyes, dry mouth, dry skin and (now) dry...other areas....it was diagnosed as Sjogrens with possible Lupus. He sent me home with an appointment in 3 months and "call if any other symptoms arise" --- I'm like, um...what are the symptoms? I'd indicated joint pain, chest pain (had gone in for it a month prior) but....how bad is it supposed to be for me to call? Anyway, I have found so much helpful information online and am going to have a consultation with another rheumatologist -- I kind of want someone to say "OK, you are lucky, we caught you early, now here's what you can do to manage this and keep it at bay!" Maybe that isn't a possibility, but I don't like thinking I have to just sit and wait as other symptoms show up and then deal with them! I'm starting a detox diet next week to see if any foods are causing the digestion issues that started last fall...going to try to eliminate anything I need to I guess! It is nice to have communities and forums to look to when things come up....and sometimes confirms that it is not all in my head! Thank you!

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