Thursday, January 3, 2019

Gotta Laugh

We were watching TV with our kids last week, and when this Geico commercial came on, I burst into laughter and continued to chortle for what my son thought was much longer than the ad deserved.

He said, "Mom. It's funny but not hysterical!"

Ha. The boy doesn't get it. It IS hysterical because when my tremor is at its worst, that is what my mealtimes look like -- except I don't need the vibrating chair.

Ah, well. I'd rather laugh than cry.

Friday, December 28, 2018

Merry Merry


Merry Christmas and Happy New Year from our family to yours! 










Friday, December 14, 2018

Oh my. Sorry about that...

......as I looked further into the absence of comments issue here on Reasonably Well, I realized with horror that I had 85, yes EIGHTY FIVE comments that were languishing in an obscure little place on the internets awaiting my moderation. Which I did, immediately.

I used to receive notifications when I needed to moderate a comment, which doesn't seem to be happening any more. I'll have to delve into that ASAP.

But the PUBLISH button has been firmly pushed, so all of those wonderful, insightful and warm comments are out there for all to see. Thank you for hanging in with me, guys.

Wednesday, December 12, 2018

It's beginning to look a lot like Christmas...



It's been such a hoot decorating our new house for Christmas. For the most part, except for the Christmas tree -- more about that later, I have just opened the same boxes with holiday decor that I have been opening for decades and spread our familiar stuff around. Stuff that I've lugged around through four houses now with such good memories firmly attached.

But even though they are all familiar things, how different they look when placed in a new surroundings.







When I told my friend Karen that we were looking to move to a different house, she asked me what my must-have criteria was and when I was mulling that over, she told me that I simply had to have a window over my kitchen sink so that I could decorate it for all the seasons. And she was right.


The Silver Star range of mountains are so pretty decked out in snow. My kitchen window items haven't been placed against a stunning backdrop such as this before.

One of the first boxes I asked John to get out was the artificial Christmas tree. At 7 1/2 feet tall, I wasn't sure how it would look in a room with an enormously high ceiling. I'm not sure how high it is, but when we put that tree up it looked pathetic. And lonely. And short.

So my son and daughter and their family were here that day. I was making noises about being all frugal and making this work somehow and all that blah blah blah. And behind me I heard the kids placing bets on how quickly a new ginormous tree would arrive at our front door.

Yeah.

It came a couple days ago, a big ol' ten-footer. Which still looks a little short in here if you ask me. But it's beautiful so we're keeping it.


John, bless his heart, assembled and decorated this thing since I was a bit out of commission having had my hip bursae injected that morning and after receiving the usual firm lecture about rest and ice being my best chance at three months of pain free hips. So my butt was firmly glued to my ice pack layered recliner.

He did an amazing job, I think. I love this time of year.

A comment about comments

Someone asked me recently if I had disabled the comments feature for Reasonably Well, since she hasn't seen any lately.

I have noticed the same thing. I have received lots of emails, though which is nice and always appreciated. So I sent a test comment, which demonstrated that the feature is working just dandy.

If you would like to respond to my posts, do it in whatever manner that is most comfortable for you. But if you are asking a question, remember that most likely others have wondered the same thing. So a public comment may be helpful to everyone.

Monday, December 10, 2018

Let's talk CellCept.

Image found here

We all know that Sjogren's is a disease that affects the whole body; and my body reminds me of this frequently.

Blah.

My most recent flare with it's exhaustion and explosion of rashy skin, demonstrated this eloquently. And Dr. Young Guy responded by increasing my dose of an immunosuppressant. I have taken CellCept for years and have tolerated it really well. But it appears that at this dramatically increased dose, we don't get along as well as I thought.

All medications have side effects. With the prescription of any new medication or dose adjustment, a benefit vs risk evaluation has to take place, and Dr. YG is highly skilled in helping me to noodle through these types of decisions. I agreed on the new dose and began taking it; it wasn't long before I saw with great relief my rash begin to fade and the pain and itching subside.

Then.

Several days ago, I began to notice painful rumblings and cramping in my abdomen. Just a little at first, then by the weekend, frequent and very uncomfortable. As in arms-crossed-over-the-belly-bending-over-at-the-waist-stop-in-one's-tracks painful. So John - bless his heart - tossed me in the car and off we went to urgent care. Thank you thank you thank you John AND whoever decided that urgent care would be available on a Sunday.

The doctor that saw me there was almost certain that I had diverticulitis but carefully looked at my lengthy list of medications and noted the side effects of CellCept (mycophenolate mofetil). One in particular - stomach pain. You can read more about mycophenolate mofetil on Medlineplus here;

What side effects can this medication cause?

Mycophenolate may cause side effects. Tell your doctor if any of these symptoms are severe or do not go away:

  • constipation
  • stomach pain or swelling
  • nausea
  • vomiting
  • difficulty falling asleep or staying asleep
  • pain, especially in the back, muscles, or joints
  • uncontrollable shaking of a part of the body
  • headache
  • gas

Some side effects can be serious. If you experience any of the following symptoms or those listed in the IMPORTANT WARNING section, call your doctor immediately:

  • diarrhea
  • swelling of the hands, arms, feet, ankles, or lower legs
  • difficulty breathing
  • chest pain
  • rash
  • itching
  • fast heartbeat
  • dizziness
  • fainting
  • lack of energy
  • pale skin
  • black and tarry stools
  • red blood in stools
  • bloody vomit
  • vomit that looks like coffee grounds
  • yellowing of the skin or eyes
Mycophenolate may cause other side effects. Call your doctor if you have any unusual problems while taking this medication.
After a CT scan which did not show anything unusual and after conferring with the rheumatologist on call, the docs determined that CellCept was the culprit. As I write this a day later and having not taken any more of that medication since, it appears that my tummy is settling down. Whew. I have an appointment with  Dr. Young Guy tomorrow and we'll problem solve then.

I am reminded of something that I know all too well but sometimes forget: that medications are powerful tools in our disease but with their power also comes some risk of adverse side effects. I couldn't believe that I would respond this way to a drug that I had taken for so long without issues. But after a dramatic dose increase, the side effects became more powerful than the benefits.

Today I'm lounging around in my jammies feeling very relieved that I don't have to add diverticulitis to my list of diagnoses on my chart.

Wednesday, November 28, 2018

Important New Sjogren's Website

I was excited to receive this letter from my friend and fellow member of the Sjogren's club, Dr. Sarah Schafer. In it, she announced the launch of her very important website: Sjogrensadvocate.com which focuses on information that reflects the newest research regarding appropriate diagnosis and care of Sjogrens patients. As a physician and Sjogrens patient, Sarah has a unique and valuable perspective on our disease. Future patients are already benefiting from her current presentations to educate medical students about our disease; and now with the launch and continued development of her website this invaluable information will be available globally.

Well done, Dr. Schafer.

Dear friends and health care providers,


I’m finally ready to launch the first part of my website, Sjogrensadvocate.com

I focused on Diagnosis as the first section to publish.  Based on feedback in online discussion groups,  it seems to be a high priority topic. Many patients are understandably confused about the conflicting information they get about diagnosis.   Starting off with this topic also provides a good introduction to why Sjogren’s tends to be neglected by the medical system.   

As you will see in the index (the red link in the footer), there are many pages under the topic of diagnosis.  One highlight is a step-by-step guide for PCPs.  I know from my presentations that most PCPs are unfamiliar with Sjogren’s basics.  Few are aware of common early presentations or how it is diagnosed.

I suggest starting  with the first 2 blog posts and the ABOUT link in the header.  The ABOUT section describes the unique focus of this website.   It is important to know that this is not a “living with Sjogren’s”  tips or lifestyle website and blog.  It focuses on what is needed for timely diagnosis and good care. (Bolding mine -- Julia)

It is important for me to back up statements that  I make, especially in areas that still remain controversial among some rheumatologists.  I am comfortable that my information is up-to-date and compatible with recent research, the SSF and Sjogren’s experts.    I include multiple citations, and plan to give more background /context on misperceptions, controversies and unexplored aspects of Sjogren’s in future sections.    

I have some details to iron out, such as making sure the format is compatible on mobile devices.  Tech help is coming soon, but in the meantime, the site seems to mostly work on iphones and androids.  If you have trouble, try using a desktop.  And please let me know about any glitches, so I can work on them.

I hope you find this to be a useful guide,


Sarah Schafer

Monday, November 26, 2018

Holiday Worthy


Did everyone have a yummy and happy Thanksgiving? We did, I'm glad to report. I hope y'all did too.

I was wondering how this house would function as holiday party central, and it performed like the champ it is. Especially the six foot island -- it held all the Thanksgiving goodies with room to spare.




Once again, the Turkey Trophy game was a fierce competition. It was close, but the winner edged out the competition by one turkey egg. Bowling with bouncy ball turkey eggs requires skill and finesse and is HARD. Just sayin'. I stink as a turkey egg bowler.


Marcus was sad that he was too little to bowl, but said that next year he'd be in the thick of things. I love that sweet t-shirt turkey on his pudgy little belly.

Tell Grandma EVERYTHING.
The next day when the weather cleared, everyone decided to go work off all that pie by hiking around our place.



Love the Simba pose 
Surviving big holidays with Sjogren's Syndrome requires planning, pacing, and scheduled down time, doesn't it? Today I'm resting up big time. And trying to forget that there is a whole pumpkin pie hanging out in my refrigerator.....

Tell me all about your holiday!

Friday, November 2, 2018

Well.......it makes sense now.....


I've been cruising along for quite awhile. I've been feeling upbeat and optimistic about managing my energy, maintaining my weight loss, and almost had myself talked into believing that I had wrangled my disease into some kind of submission.

Silly Julia.

I also have noticed, with some uneasiness, the absence of my Bratty Inner Child Julia. For awhile. For quite some time.....

Ssshhhhhhh, Julia. Just pretend that she doesn't exist.....

Silly, silly Julia.

But everything came crashing down around my ears over the last week as I was eagerly looking forward to a visit from my friend Karen. My asthma kicked into high gear, my fatigue descended like a ton of bricks, and my Lupus rash exploded. Of course. What horrible timing! Karen and I have such fun when we get together and I had all sorts of projects and ruckus-inducing plans.

Grrrr.

Instead, I had spots and splotches that burn and itch like crazy, I was sucking on my inhalers, and having a hard time orienting my body any other way but horizontal.

Ooooohhhhhhhh.......scratch scratch scratch scratch..............

I made the call to Karen with regret. And a major dose of crankiness. It was so hard to ask her to postpone her visit but Karen is one of those precious friends that really and truly GETS IT. She told me to behave myself and go back to bed. I just love that girl.

I have never been able to predict a flare, but in all honesty, I really should have seen this major crash and burn coming from a mile away. I have had so many changes in my life over the past six months; all of them good, but even good things bring a measure of stress when they arrive at your door. And we all know what stress does to our bodies -- especially autoimmune disease riddled bodies. I was in a big old flare, so I immediately implemented phase one of my flare plan of action.

Which meant that I denied it all. Notice I didn't say that this was an effective plan.

Flares can't be ignored for long, as even I had to admit while living completely in Never Mind Land. So I called Dr. Young Guy and emailed several pictures to him as well.


This is a photo of just a few of the beasties. They really seem to like my arms.

Ewwwwwwwww. I took a photo of my back covered in the darned things too but I'll spare y'all that horror.

He increased the dose of my Cellcept from 750 mg/day to 2,000 mg/day. In divided doses, of course. Then he prescribed a burst and taper dose of prednisone for me. I have not taken prednisone for many years, having spent a great deal of time and effort weaning myself off of the stuff after having been on it for an entire decade, so I was hesitant to start on it again even for a short amount of time. So I sat on that prescription for a couple of days hoping that the huge increase in my immunosuppressant would be enough to get me and my crabby skin moving in the right direction.

By day two, I was still scratching myself silly and was almost completely bedridden from fatigue, so I caved, had the prescription filled, and this morning took the first dose.

And guess what? Within a few hours I recalled vividly just WHY I wanted to be weaned off prednisone. There's loads of reasons: the nervous useless energy, the carb cravings, the need to write extensive lists of useless projects, but the main one?

Here's why: BICJ loves prednisone.  She's fueled by it. It ignites her. It pulls out all of those restraining stops that I have tried so desperately to create to keep her in her little quiet corner.

So yes, BICJ was unleashed this morning. And pardon my language here, but she is a ROYAL PAIN IN THE ASS. Yes, she is. I made this realization after having leaped -- yes, leaped -- out of bed and then threw jeans and a sweatshirt on and found myself in the kitchen dragging out baking supplies with my apron dangling around my neck. I heard myself instruct Alexa to blast classic rock as I fired up my KitchenAid. Before I knew it I had whipped up a chocolate cake and had two loads of laundry done. I was trembling with pred shakes, was dripping with sweat, yet felt completely unable to sit still.




And all along BICJ was cackling with glee.

By the time the cake was out of the oven, I had regained enough control of the situation to try to reason with her.

Bread!! Let's make homemade bread next!!

Nope. Calm down here, girl. Why don't we put an old movie on and lie down for awhile...

Are you kidding me?! We're just getting started! There's so much to do! Thanksgiving will be here soon and we need to plan the menu and think about decorations and..

Menu? That's easy. We've been doing this for so many years. Turkey. Stuffing. Mashed potatoes. Gravy. Pie. Boom. Done.  

Leaves!! It's a beautiful afternoon and we should be raking leaves! Just look at 'em! Bags and bags and bags of 'em.


 *stands up and heads for the door*

*heads back to recliner while wiping perspiration from face* You sit down right now, young lady. We're plunking ourselves right back into this chair.

*rolls eyes and sticks out tongue. begins to jiggle legs restlessly and twiddle thumbs* I'm going to call up Terese and tell her to......to.......to......um.......come get me so we can go do something really BAD! Yeah! So there!

You see what I'm up against here, people? I'm determined to corral BICJ before she causes me to gain twenty pounds and/or runs my energy down to non existent levels.

In the meantime, wish me luck with this nasty flare. It's a whopper.

Saturday, October 20, 2018

Life on Mount Norway.......

..........is good.



I love the orangey-red colors on my maple tree that lives just outside the laundry room door.


This little guy spun a perfect web in one of my hydrangea bushes. While I'm not a spider fan, still I admire his craftsmanship. So I resisted my impulse to scream and squash him.


John thinks that it's funny that I invite Lulu to have breakfast with me at the kitchen island every morning. Of course, Lulu thinks it's just what she deserves and about time, too.  Since we moved out to the country, I have yet to put her on a leash when we go on walks.


I love seeing morning clouds below me. 

 

We hear the darndest things up here on our mountain. I think sound carries extremely well especially from the river valley below us. There is a moto-cross race track for off road motorbikes waaaaaayyyyyy across the valley on the next ridge of mountain foothills north of us. It's miles and miles and miles away. We bought our place knowing it was there and that when races were scheduled, we'd probably hear something from there. And we do -- but it sounds like a distant buzz of angry bees, not motorcycles. Which is fine by me.

Yesterday, from somewhere west, back in the forest, first I heard the unmistakable gobble gobble of a turkey. Repeatedly. Then, the excited yapping of a puppy. And then some guy yelling what seemed to be a dog's name in frustration.....I'm thinking that there was some kind of interesting story in that sequence of events. Grin.

Some of my favorite neighbors live in a pasture about a mile down the road from our house.


I can hear their moos every day. I love it -- makes me feel like a kid again when we had Black Angus beef cattle on Dad's farm. I laughed when I first saw them and told John what a naughty species of cattle this had been for Dad. It seemed we were always having to chase them back to where they belonged since they were able to escape their pasture at will. And sure enough, a few weeks ago, John and I came down the road and were met with the sight of a frisky little black guy standing dead center in the road. Exactly where he shouldn't be. Looking back at his buddies in the pasture with what I swear was a "nanner nanner" expression on his face.

John let the farmer know of his escape but he didn't seem too concerned. I'll bet it happens all of the time.

So much excitement around here. Turkeys and Angus and motorcycles, oh my..

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