Thursday, February 9, 2017

Let us all have a moment of silence......

.........to reflect upon the demise of my beloved MacBook upon which the majority of Reasonably Well's posts have been written.

Yes, I am sad to report that my laptop has gone to that great computer heaven in the sky. So I am awaiting the delivery of a new Dell laptop (gasp! Not an Apple, I know!) with baited breath.

Will I be able to blog in Windows-land? Will my posts have a different tone arising from a different laptop? Will I ever get used to PC controls?!

Stay tuned.

Wednesday, January 25, 2017

Meet Janet Church And SjogrensLife

I have added a link to this excellent blog to my sidebar. Check out SjogrensLife, a blog written by Janet Church. You'll understand why after reading this from her About tab:


I am a seasoned technology marketing executive and started my career as the 301st employee of Microsoft. I then went on to create Janet Church & Associates, Inc., a multimillion dollar technology marketing firm. I was CEO and President of this company for 18 years until I became too tired and ill to run it effectively. At the time, I just thought I was exhausted from being in the high-paced world of technology for 21 years. However, over the next five years I became increasingly ill and could not get a diagnosis. Eventually, my body began to shut-down and I was hospitalized for 3 weeks as doctors in almost every discipline ran tests. They titled this an acute “cataclysmic event”. I eventually was stabilized and then released with no clear diagnosis. I was not accurately diagnosed until 7 months later when a visiting Mayo Clinic diagnostician pinpointed that the only physician I had NOT seen was a rheumatologist. After additional lab work with the focus of Rheumatologic diseases, I was diagnosed with Sjögrens Syndrome. This disease drastically effects how I feel every day — the joint pain, the severe dry eyes and mouth, organ problems such as reduced kidney function, and exhaustion. I take several serious drugs (pharmaceuticals) to suppress my immune system. Without drug therapy, I can not function. I am not an unusual Sjögrens patient.
My natural personality is to face challenges head-on, gathering information and performing to the best of my ability. However, the “best of my abilities” has been greatly compromised. The experience of grieving my “old self” and defining my “new self” has been a challenge over the past decade, but I believe I have a system that helps me live the best life possible. In fact, I live a fantastic life in Sonoma, CA. My life is filled with loving friends, a wonderful relationship, interesting work, and all the riches nature can provide.
I am currently the Chair-elect of the Board of Directors for the National Sjögrens Foundation. I learn so much being part of this organization, that I created this site to share some of what I learn, and tips I discover, with other patients and family members supporting their loved ones.
In my opinion Ms. Church could be the poster child for the Invisible Illness concept, yes? 

Her latest blog post from January 9 2016 is a real goodie:

When Major Grief and Autoimmune Disease Collide

I am so relieved that it is 2017!  I am happy to say that I am feeling my usual self today. But it was hard work getting back to emotional and physical status quo — because the last four months of 2016 was absolute shit!
This blog post is about how the emotional stress of a major life event collided with my Sjögrens, caused a major Autoimmune Disease relapse, and what tools I used to pull myself back up to my usual state of normal. I also, now, have a game plan for the next major life event!
It has been exactly four months since my Father’s funeral. He was a diabetic on dialysis and we had watched his health decline rapidly during the year. When he entered the hospital for (another) infection, it was not a total surprise that he decided to reject dialysis. He simply said, “I’m done”. And we believed him. We supported his wishes and 10 days later he was gone. We had an amazing family experience (Dad, Mom, me and my brother) as we stood vigil at his bedside sharing stories and love. It was a very good death, and I am thankful for this.
Major life stresses, like death, happen. No one can prepare you for how you might react, so you need to trust that you know yourself best (and you know what will help you most). Managing my Sjögrens while going through all of this was a challenge, and ultimately not wholly successful, but I was able to keep myself together to get the critical things done. I wanted to give myself the best chance of being present for my Dad, my Mom and brother, and to be able to be an active participant in the work that happens after death (the funeral, the house, the family grief, the mourning friends). Continue reading here. 

Wednesday, January 18, 2017

Howdy

Today, I had two people ask why I have not written any posts since Christmas.

Has it really been that long?! Goodness.

Here's why: I'm fighting some significant fatigue issues these days. John's mom is in a downward spiral with Alzheimer's disease, and my mom continues to decline following multiple strokes, so we have made lots and lots of trips back to Wisconsin. So many, in fact, that many of the flight attendants on the Delta non stop from Portland into Minneapolis seem familiar to me. The combination of stress and travel have taken their toll on my energy levels, especially coming on the heels of a couple major holidays. So I have moved Reasonably Well a little lower on the priority scale, so sorry about that.

We all know that it is impossible to predict when a fatigue flare will end, so until I climb back up out of this energy black hole, I'll probably continue to post less frequently than I have in the past. I'll try my best to put important stuff or really great stuff up whenever I can.

But.

If by some miracle, I work my way up on the 900 person waiting list and actually get to attend a GOAT YOGA CLASS; then I will post immediately. Instantly. With pictures.

My friend Karen, who brought this amazing class to my attention, says she suspects that I would focus far more on the adorable baby goats than the yoga exercises and she's absolutely right. You can read more about this awesome class here.

Saturday, December 24, 2016

'Tis The Season

Merry Christmas, everyone! My gift to you this year is this fabulous corny knee-slappin' movie: A Muppet Family Christmas. So settle in with a plate of Christmas cookies, put this YouTube video on full screen, and enjoy!


Our kids have loved this video forever. Every time we pack our home to the rafters with family and friends, someone has to quote Fozzie's mom: "Two of you will have to sleep on hangers hung from nails in the wall!" My favorite scene is Jim Henson washing dishes at the end. Awww.

Happy Holidays to you along with wishes for a happy and healthier New Year!

Saturday, December 17, 2016

We Need Answers

I need to rant.

Maybe it's because I'm in a really bizarro mood today. But the need to sputter about a thing that I won't be able to change most likely arises from irritation after reading the results of several Sjogrens studies over the past few days.

None of these studies are new ones, so I don't have anything exciting to report. Which is rather disappointing. But because I have seen them before, on second reading of several studies in a row, something stands out to me that I hadn't noticed before.

While I have no hard data to support this, it appears to me that the vast majority of study authors (and yes, I know that there are some that haven't) choose to research things like eyes and tears and saliva production and autoimmune antibodies in the study of Sjogren's Syndrome because THEY ARE MEASURABLE; not because they're the most important to Sjogren's patients. I've told anyone who would listen repeatedly and usually at the top of my lungs: Yes. I have significant dry eyes and dry mouth but those symptoms pale when compared to the life-altering bone-crushing disability-inducing fatigue and the resulting depression and anxiety that follows. I am not alone in feeling this way.

I continue to regularly receive letters from newly diagnosed Sjs patients who are terrified at the severity of their fatigue; wondering how this will impact their life in general, as well as their ability to be parents, employees, and family members. They write to me because they don't get information and guidance from their medical caregivers, and when searching online for information on fatigue find very few reputable sources which only contain vague information. Because there just aren't enough studies which provide useful data that could lead to treatment. So when trying to answer these letters, I too can only provide vague information and can't answer any of their very valid why, WHY, WHY?!!! questions. In my personal experience with this difficult disease I'd like some hard and fast answers to these questions too.

I want to grab study authors and and unsympathetic rheumatologists by their white lapels and shake them until their teeth rattle. People. I know that the research tools which objectively measure fatigue and depression and anxiety are elusive, and I understand that at this point in time there are very few treatments that offer real and lasting relief of autoimmune related fatigue. The realities of those two difficulties are what makes them more important to study and discuss, not less.

Since when has science been flummoxed by tackling something hard?

We need a Sjogren's version of the Wright brothers here.

Image from Library of Congress 

Friday, December 16, 2016

I've Been De-Scrooged

Why do they put these pure-sugar-terrible-for-me-but-I-love-'em-anyway things smack dab in front of the store?

John and I were stomping the snow off our boots as we headed into our local Walmart the other day and I had crankily decided that I needed to use one of their putt putt carts. It was one of those crummy low energy days for me, which always puts me in a bad mood, so I chose one from their herd of six carts - yes SIX, God bless 'em - and glumly rolled toward the bakery. But before we made it past the Little Debbie display an elderly substantially sized gentleman wearing a Walmart lanyard with employee credentials dangling from it stepped in front of my cart and brought an imaginary walkie talkie to his face. In an official tone he said, "I've got her right here, officer. Yes, yes, she WAS going 60 miles per hour."

I couldn't help but be delighted. This was my kind of guy. Especially since he had one of these perched on his head: 


My crabbiness evaporated immediately. 

He told me -- with tinsel sparkling as it swung from his plush branches -- that he had bought his on Amazon (you can buy your very own here) and had tricked it out big time by hot gluing miniature presents, shiny ornaments, and garland on it. I strongly suspect that he had added the Mini Christmas Tree Ornament 32 Pack to his hat order. 

The effect was impressive. I asked if I could have his hat to which he emphatically replied, "No." But he wished me happy holidays with a wink and an enormous smile; after which he returned to his post in front of the store and began to cajole other grumpy shoppers like myself into a better mood. 

After he left, John and I looked at each other and burst out laughing. A two minute interaction with this man had radically changed the tone of our day for both of us (Because when Julia ain't happy, ain't NOBODY happy. Seriously.) which was a CHRISTMAS MIRACLE! *insert video clip of snow falling gently while Hallmark channel sentimental music plays in the bakery aisle as Julia and John look at each other with hands clasped and shining tear brimmed eyes*. 

Not. 

What actually happened was that John told me he'd meet me over by the eggs and we headed off in different directions. But we were both grinning. 

Our balsam-topped Walmart friend is just one of the reasons that I love this time of year. Wouldn't it be great if I walked into the store wearing a hat just like his on a day that he was working? I wonder if Amazon could overnight one of these beauties..... I've got my glue gun at the ready.

Friday, December 9, 2016

You're Invited

It's that glorious time of the year when parties abound; so I've decided that now would be the perfect time to join in the fun. So let's have a Reasonably Well Holiday party. Ready? You are? Brilliant!  Don your prettiest or most handsome party clothes, and we'll celebrate Christmas, Hanukah, Kwanza, New Year's, and whatever holiday you feel deserves to be marked by a raised glass of bubbly and a witty toast.

Cheers! Here's to you, my wonderful friends who have been so supportive and generous and well.....just excellent people. I'm sipping my favorite decaf coffee here at the party, so it's raised high in your honor and in best wishes for a fabulous holiday season and beyond.

Slurp. Delicious. I'd better be careful not to spill coffee on my stunning peacock feather and sequined full length gown. I had to lose 40 pounds overnight to get the zipper zipped. What are y'all wearing?

Like my cup and saucer set? My buddy Karen has a matching one. 


I hope y'all said Merry Christmas to Pinky as you came in. He's all toasty in his Santa coat and hat. Notice how I had to wrap it around the porch spindle to keep him from blowing away in this cold blustery weather. But don't comment about that to him. He's a little touchy about his clothing.


Did you notice that your invitation requested that you bring your favorite party food? I've made my mom's yummy brandy drenched fruitcake. Mmmmmmmm. Alcohol-y......*hic* Let me know which delicacy you've decided to bring. You can put it down on the buffet table spread with my newest Christmas tablecloth. Check out the goat pulling Santa's sleigh and the elf riding a pig. Aren't they awesome?

I got it online on an Etsy shop after learning that actually the goat and pig depicted on this terrific vintage cloth are very traditional Scandinavian Christmas characters. Delightful. You can buy your very own here. (It is an eBay link so after this is sold, who knows where you can find others. Sorry.)


I've always loved goats. But y'all know that.

Once you have your plate heaped with treats and are balancing your drink in your other hand join me over by the Christmas tree. (Psssst - Terese? Um. It's not good party etiquette to wade in the chocolate fountain, dear.....WELL. I NEVER. It's also not good etiquette to dribble chocolate over your hostess' head! Indignant sniff.)


Pardon me as I lick the chocolate off my sequins. Oh golly. Now it's dripping from my ears......say. Quite delicious chocolate fondue.

But enough about me. Tell me EVERYTHING. It seems like forever since we've talked.

What a great party. Wait. What's happening way over by the buffet table? Oh my.

People? People?! PEOPLE!! Do NOT join Terese in the fountain! At least have the courtesy to remove your socks first!! Golly. I'll never get all that chocolate off the ceiling..... What do you mean "it's all my fault"? Because I got a fountain the size of a wading pool? How ridiculous.

Guess if you can't beat 'em, you should join 'em........MOVE OVER, GUYS. I should have put a stack of beach towels under the table. And I'm not paying for anybody's after-the-chocolate dry cleaning. Just sayin'.

Happy Holidays everyone!

Sunday, December 4, 2016

Being Soaked in Sweat isn't Fun

Well. One biggie holiday down, one more to go! So even though December is here and we have a snowstorm predicted for tomorrow......it's still Thanksgiving in my house.


Well, it's Thanksgiving on my formal dining room table, that is. Our method for changing out holiday junk that I threaten to give to Goodwill every year um, I mean precious seasonal decor, is pretty simple. I go through the house and grab anything that's orange or looks like a turkey, a pilgrim, or an Indian, and unceremoniously dump it all on top of my table. Then I repeat until I am reasonably certain that I've collected everything.

I always forget something. Lulu promised she'd scout around for missed things but I think she got distracted by a neighborhood cat when I took this picture.


The next important step is to round up John and ask him to drag all of the boxes marked "Thanksgiving" or "Fall" down from the attic. He never seems to mind, bless his heart. Especially when it's time to lug all of the filled boxes back upstairs, and THEN find all of the Christmas boxes and drag them downstairs.

Whew. It's hard work for all of us. I just love every minute.

So the only thing that takes some of the fun out of this process is my inevitable post-Thanksgiving weekend crash. It never fails. I look forward to putting up our Christmas tree and getting all the stockings hung and all that stuff, but it takes me forever to get anything done. I'm tired, and when I do muster up some energy, I end up drenched in sweat.

If a guest that hasn't seen me standing in a puddle of perspiration happens to be here, they'll assume that I'm having a hot flash. And then I try to explain that I'm not soaked because of my hormones and that I don't feel warm at all. In fact, my skin is ice cold. "It's just one of those autoimmune things..". I say and then the guest's eyes glaze over with incomprehension.

This year, I seem to be having more fatigue and sweaty hours than usual. In fact, I'm sitting here at my computer with a bath towel by my side, which I use to mop my head and face and neck and chest.

My son suggested that I look into using one of these things when I know a sweat-soaked incident is coming up, so I ordered one.

It's supposed to keep you cool but it also is supposed to absorb perspiration. I don't care much about the cooling factor but I sure could use some help dealing with all this sweat. I ordered the headband version too so I'll have help at the top AND the bottom of my head. Has anyone used these things? I'll let y'all know how they work for me. 

But in the meantime, it's time to turn up the Christmas music and get back to my turkey packing. Sing it Bing! Ahhhhh.............love it. 

Tuesday, November 22, 2016

I've Put it Off for Awhile.....



Getting ready for Thanksgiving? Yes?

Me too.

I'm doing the usual stuff like making up the guest beds, thawing out the turkeys - yes turkey pleural - and simmering the gravy out of a pot of giblets. But I've had a cleaning bee in my bonnet for ages and I've decided to add one more task to my getting-ready-for-thanksgiving schedule. All of the kids have moved out of the house ages ago yet I haven't cleaned out the bathroom vanity that they all shared. Yep. Six drawers STILL holding contact junk, a zillion different types of hair styling goo, brushes, hair dryers, hair straighteners, hair curlers, makeup, makeup brushes, and more half-empty bottles of nail polish than I cared to count. Among other things.

Yikes.

It was time to roll up my sleeves, grab a handful of garbage bags and clean all six of those drawers out. But since I had no idea what the kids wanted me to save, this required extensive texting. Thank goodness for smart phones with cameras.

When I sent this picture, not one of 'em would claim this delightful item:


They all sent back the same response: "EWWWWW. Not mine"

I suspect one of them is not 'fessing up to ownership of a fifteen year old retainer. 

As I made my way through the drawers, we played the same game that we all have played for the last twenty five years or so: Keep it or Pitch it. I'd send a picture of something, and if I could get one of them to admit owning it, made them decide if I was to throw it out, or put it aside for them. 

I told them that if I didn't get a text back after sending the picture the thing would go in the trash. Bam. I warned them that their mother was getting ruthless over here. My son texted back, "Just make sure not to throw out my shaver and shaving cream."

I rifled through the remaining junk in the drawers. And, of course. No shaver. No shaving cream. 

I am proud to report that after lugging out two garbage bags of junk and scrubbing out years-old layers of hair products and hand lotion, every one of those six drawers is sparkling clean.
Whew. 

I think I'm too exhausted to make any food for Thanksgiving. But I'll send all of our guests into the bathroom to admire my work. 

Happy Thanksgiving, everyone!  



Wednesday, November 9, 2016

Truth: Worth it on Jezebel


Notice the big old picture of an Azo box at the head of this post? At the moment, I consider this medication a life-saver as I battle yet another urinary tract infection. I always, but ALWAYS have a box of these little brown beauties in my medicine cabinet. Because I get more than my fair share of UTIs and Azo helps relieve their resulting mind blowing discomfort. This typed as I dash from my comfy chair to the bathroom.

Nurse Julia says that if you have a UTI, be sure to drink lots of water, wear loose fitting pants and cotton panties, avoid bladder irritating drinks such as alcohol, coffee, and citrus drinks, and to get thyself to a physician-ordered-pee-in a-cup-urinalysis-type place if you have symptoms for more than 48 hours. If you have never had a UTI and aren't sure what the symptoms are, well bless your lucky little heart. And bladder. Here's the symptoms per Mayo Clinic:
Urinary tract infections don't always cause signs and symptoms, but when they do they may include:
  • A strong, persistent urge to urinate
  • A burning sensation when urinating
  • Passing frequent, small amounts of urine
  • Urine that appears cloudy
  • Urine that appears red, bright pink or cola-colored — a sign of blood in the urine
  • Strong-smelling urine
  • Pelvic pain, in women — especially in the center of the pelvis and around the area of the pubic bone
UTIs may be overlooked or mistaken for other conditions in older adults
Here's the thing - if you have had one UTI, you will be totally in fear of having another. But take heart. The active ingredient in the over the counter drug Azo is phenazopyridine which interestingly enough is a dye. It is taken orally and is soothing to the urinary tract, and boy howdy. It is very effective for me. Hence my desire to lift my glass of cranberry juice in agreement with this author of the following article which sings the praises of this medical miracle.
But before you click on over to read the piece on Jezebel, consider this: Nurse Julia cautions that if you have never had a UTI before and suspect you may have one, contact your doctor immediately. Also, don't take Azo for more than two days without your doctor's consent. Read these important precautions when considering taking this drug. This medication will not cure a UTI, just masks some of it's symptoms. I think the potential side effect of staining your tears and contacts is just kind of creepy. Luckily I've never noticed this. 
Here's yet another warning: the Jezebel article uses pretty salty language so it's not for the faint of heart. Here's an excerpt and the link. I think I'll take my schnauzer and my blankie and my heating pad and big-gulp size water glass and take a nap.......
By Chelsea Morgan Hoffmann
I get UTIs a lot. I don't drink enough water (which is really dumb, and I'm working on it, I swear); as a result, I often suffer from the horrible, my-body-will-never-be-right-again pain that anyone who has ever suffered a UTI knows about. (Continue reading here.)

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