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..

Wednesday, October 10, 2018

Team-Based Autoimmune Care in Pittsburgh


Check this out from Medscape Nurses: one stop autoimmune care in Pittsburgh. What a great concept! You can read the complete article here. (Sometimes sites like these require you to create a free password protected account to gain access.)

Closing the Care Gap in Autoimmune Disease

Miriam E. Tucker
A new, first-in-kind center in Pittsburgh is addressing a major gap in medicine: the complex needs of patients with one or more autoimmune conditions, who typically see numerous specialists in an uncoordinated fashion and often remain undiagnosed and untreated for years.
The new $30 million Highmark/Allegheny Health Network (AHN) Autoimmunity Institute offers a distinct alternative by providing comprehensive multispecialty care in a one-stop setting, and also by conducting research into diagnostics, treatments, and care delivery.
The institute comprises four "centers of excellence" for the treatment of lupus, rheumatoid arthritis, inflammatory bowel disease, and celiac disease. But the facility's many specialists—including those from rheumatology, allergy/clinical immunology, pulmonary, dermatology, gastroenterology, nephrology, endocrinology, and cardiology—all work together to address the needs of patients with a wide variety of common, not-so-common, and sometimes unlabeled autoimmune conditions.
It's the design of the future, in my mind. It's getting doctors out of their offices. We consult with each other...
"What we're doing is unique. You will not find this kind of institute that has this kind of multidisciplinary, comprehensive approach to patient care along with research," says rheumatologist Susan Manzi, MD, MPH, chair, AHN Medicine Institute and director of the Lupus Center of Excellence.
Housed at Pittsburgh's West Penn Hospital, the Autoimmunity Institute fills about 48,000 square feet, including clinical, laboratory, and administrative space. There are 16 exam rooms surrounded by a large corridor, dubbed the "huddle hall," where the specialists, along with nurses, pharmacists, nutritionists, and other staff, meet to discuss management of individual patients. There are no private offices with shut doors.
"It's the design of the future, in my mind. It's getting doctors out of their offices. We consult with each other...Doctors don't typically do it because it's not convenient. We've made it convenient," Manzi says.
"It's designed as a new model of team-based care," says Autoimmunity Institute chair Joseph M. Ahearn, MD, who is also chief scientific officer for Allegheny Singer Research Institute at AHN and professor of medicine at Temple University's Pittsburgh branch.....continue reading here

Saturday, October 6, 2018

A New Buddy

After we moved out into the country, John and I purchased a garden tractor and trailer. I've named her Daisy and wake up every day looking for a good excuse to drive her around. What a hoot.


Isn't she gorgeous?


Sometimes I let John drive her around, but mostly she's MINE.


Look at Lulu. She loves when Daisy and I are on the move. Lulu runs circles around us as we zip along. Poor puppy is exhausted by the time I'm done mowing the lawn but it's a happy-dog tired.

I was trying to figure out why I get such a charge out of my tractor, and I think one of the reasons is that when I fire her up and take off, I feel kind of invincible. And powerful. Daisy lets me do stuff that I would never ever consider doing without her. So there's the lawn mowing thing, sure. But with two and a half acres to take care of, there's always other things to do. Like hauling downed branches and pulled weeds over to the burn pit. And transporting our garbage and recycling containers waaaaayyyyy out to the designated spot on our road. She has power steering so maneuvering her doesn't take much of my energy and can turn on a dime.

We actually own five acres but only half of it is kind of flat. The other two and a half acres drops vertically down the mountain so we just let it do it's own nature thing. John keeps threatening to strap a climbing harness on and head down to the bottom of our property but I think that may not be such a good idea. I think that sitting on our deck with binoculars is a safer option, don't you?

Hm. Wonder how long it would take for Daisy and I to motor over to Terese's house?

Tuesday, September 25, 2018

Icing My Buns

As is my routine, I get the bursae in both hip joints injected every three months, and today was the day. Which meant putting my big old butt in bed with ice packs tucked in around the injection sites. I stay this way for much of the day in order to give my crabby inflamed trochanteric bursae a chance to settle down and behave themselves.

So while I'm cooling my jets, I cruise around Netflix to find a show upon which I can binge watch. My latest eye glueing series is the Great British Baking show, and for the most part I enjoy every minute watching amateur bakers commit the same kitchen blunders that I am so very capable of.

Well, except for the time that one lady stole another contestant's custard right out of the refrigerator. Can't say that I remember ever purloining someone else's patisserie staple.

More importantly, there's this ......... extremely annoying ...... thing in the show's opening sequence which I just have a really hard time with. Watch:



Did you see that?? Did you see that this baker's hand placed all of the raspberries on the top of that gorgeous chocolate cake EXCEPT FOR THE LAST ONE?  That hole where THE LAST RASPBERRY SHOULD HAVE GONE keeps me up at night.

What? You've never noticed that?

Well.

What has been seen can never be unseen.

You're welcome.

Monday, September 10, 2018

One Happy Camper


Check out this picture. See the lady with the huge goofy grin?

Hey. No judgments. Although I'll admit that characterizing my face as goofy is a major understatement. She's smiling so hard that her cheeks are screaming in pain for several reasons:

First: She's holding her most adorbs grandbaby (also her only) on her lap.

Second: While snuggling said precious bebeh she's looking at this amazing view and is able to say that she now lives there. 

Third: All the things that she hoped for in this Reasonably Well post back in May 2017 have materialized. Woot! A family with two little boys have purchased and moved into our old home, we found and purchased a home on property, and have MOVED IN. Granted, even though all of the financial and legal paperwork (whew!) is signed and safely tucked away in John's filing cabinet, and as far as the state and county are concerned we do indeed have a new address; in spite of all that we are still living up to our ears in moving boxes. But I don't care. It's super easy for me to look blissfully past those boxes since I have a drop dead gorgeous view of the Cascade mountains past the cardboard and strapping tape mountains. 

Most importantly, our new house is a master on the main ranch with a daylight basement. Everything that I need is on the main floor and I have only to maneuver two steps when getting myself from my car into the house. Pretty spiff, I think. Also much safer. John says that if I even come close to taking a tumble on those steps that he will build a ramp. I really want to avoid breaking any more of these old bones. 

Speaking of my history of falling, did I ever share with y'all my experience of tumbling down a full flight of stairs in our old house onto a hardwood floor last Christmas? No? Actually it was an impressive show of clumsiness that still makes me stupidly proud: as I was bouncing and flopping on my way down, I marvelled that I could MAKE A FORTY FIVE DEGREE TURN MID FALL at the staircase landing which allowed me to continue flailing my arms and legs all the way down to the bottom of the stairs. 

Not to brag or anything, but very few people possess the ability to make that maneuver. I take pride in that. What can I say? It's a gift.

Fourth: I am making progress in learning about and reducing the tremors in my upper body that have plagued me for the last few years. I haven't shared much about this struggle with y'all; one reason (among many) being that the tremors in my hands had become severe enough to make typing on my laptop next to impossible. Which made posting to Reasonably Well very difficult. 

Hunt and peck typing with one finger makes it really hard to keep a blog going. Eating soup with a spoon? Forget about it. And don't even get me started on tweezing eyebrows. Ow.

My sense of humor and patience had completely evaporated and writing about it all here on the blog just seemed to remind me how much I was struggling. I am certain that denial factored heavily into my reluctance to document it all. So I didn't. 

But working with a young smarty-pants neurologist and after several months of medication reductions, adjustments, and additions, I can happily say that it's a "two-hands-all-fingers-on-the-keys" typing experience today. Which is not to say that my neuropathies and tremors and restless leg syndrome have been cured; not by a long shot. But having legible handwriting and steadier hands goes a long long way in brightening my state of mind. I'm hoping that my balance issues will improve as well; however Smarty-Pants Neurologist isn't promising anything yet, and I'm learning to live with that uncertainty. I'll take any improvement no matter how small. 

How could living here not help facilitate calm and renewal?


Friday, July 13, 2018

Something New

My friend Karen and her family visited me last weekend, and as usual it was great fun. While she was here, she asked me when I was planning to write another post because she was tired of seeing a picture of my broken arm every time she visited Reasonably Well. And as usual, this was a good observation.

So here I am and I'll make sure to add several pictures to this post. All of which provide something far more enjoyable to look at than that annoying cast. Here's one of my favorites:

 Doesn't Marcus look as though he's thinking, "Graaaaammmmmmaaaaaaa! Enough kisses already!"

These were taken on the weekend after my cutie patootie grandson Marcus was born. I love being a grandma.


Here are some of the last pictures that y'all will see of our yellow house. We accepted an offer on our home from a young family with two little girls this week. It makes my heart smile to think that this home will have teensy kiddos living here.




I wonder what Lulu and her Santa Lambchops will think about our new house? We are moving to a home that checks all of the boxes on our wish list. It has a master bedroom on the main floor which means that the likelihood of me tumbling down stairs will decrease considerably. Hopefully. It is situated on five acres, half of which are douglas fir trees and at 1100 feet elevation, has a great view of the mountains.

I find myself becoming aware that I simply cannot tolerate noise as well as I used to. I feel an acute discomfort when I am in a noisy environment. It is blissfully quiet at our new place. If all goes as expected, we will move in to our new digs mid-August.

Moving should be an interesting experience. I'll keep y'all posted.

Wednesday, April 4, 2018

I've been busy lately.

Imagine this beauty attached to me right about at the shoulder.

So the good news is that I have my stitches out, my black eye is finally beginning to fade and my broken arm is sporting a new and improved splint that has velcro so that I can take it off to shower!

What's that? I haven't shared this latest catastrophe with y'all? Sorry. My bad. Guess I should start at the beginning, then.

Like a lot of people with autoimmune disease, my balance isn't great. So about two and a half weeks ago, my crummy balance led me down an outdoor set of concrete stairs face first. Wasn't pretty or pleasant. I ended up with a gash over my eyebrow, an impressive black eye, a broken arm, and couple of broken ribs.

This has made me crabby.

It has also made me rather odiferous too. Ever try to bathe one handed? Especially when that hand is the non-dominant one?

Luckily, it will all heal. As a matter of fact, I now can take my arm out of the splint and have begun doing very limited range of motion exercises. I can almost camouflage my black eye with makeup, and the scar over my eye should heal well. The ribs will take longer to heal than my arm, but the feeling as though I have been hit by a tank has passed. Whew.

 My fatigue in response to my injuries has been overwhelming, and I'm not surprised. It must be the demand for healing has sapped me of much of my energy.

But enough about me. How have y'all been?

Woot

Comment away to your heart's desire, people. I have finally figured how to successfully publish your observations, questions, and pithy responses. So keep 'em coming. 

Thursday, March 8, 2018

Glitches

So I've been having problems with my blogging platform, Blogger. It has made publishing the comments from y'all impossible. The issue may be in my laptop, or in the mysterious workings of Google and Blogger, who knows? In the meantime, I think it may be a good idea to hold off on writing any comments until I get this figured out. If you have sent in a comment that was not published, I'm sorry about that. But I'm on it.

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