Saturday, June 3, 2017

Y'all were right.

Thanks to those that cautioned me to be super vigilant for flares of autoimmune activity after my stressful spring. Because even though adrenaline kept me going strong through Mom's funeral and the trip back home, I was knocked for a loop over the last few weeks with tremendous fatigue and a brand new addition to my autoimmune club -- rosacea. And it isn't pretty:


Would YOU be willing to be seen with someone sporting a nose like this?? Ewwww.

My doctors suspect that the stress I've been experiencing lately contributed to the appearance of rosacea. And I was surprised to read that this schnozz-reddening disease could be autoimmune in nature:
Female rosacea patients have higher rates of autoimmune disorders including type 1 diabetes, celiac disease, multiple sclerosis and rheumatoid arthritis. Men, with rosacea, however, were only more likely to suffer from rheumatoid arthritis, according to a recent study.
The findings, published Jan. 30 in the Journal of the American Academy of Dermatology, provide more evidence of a link between rosacea and autoimmune disorders.
“Rosacea may be a marker for autoimmune disease,” says study lead author Alexander Egeberg, M.D., Ph.D., who works in Denmark at the Department of Dermato-Allergology at the University of Copenhagen’s Herlev and Gentofte Hospital.   Continue reading here
So my plan of care lately includes rest, rest, and more rest; as well as following a careful regime of cleansing, moisturizing, applying topical medicines, and sunblocking my face.

Here's hoping that I can beat this into submission before Daughter #1's wedding in September.

Tuesday, May 23, 2017

Swingin' In The Shade



A few days ago, John hauled out my hammock chair. So Lulu and I immediately crawled into that ancient thing that has knots and strings hanging out everywhere. But it still swings just dandy, and we love it.

The view from my swing has always been lush and green, but since we sold the bottom half of our property, and judging by the beginnings of excavation there, I suspect that a new house will soon appear. I'm guessing that my view will change dramatically. But that's OK. That chunk of land was just waiting for a family to live there and I can't wait to see kids climbing all those trees that John and I planted so long ago. I'm just tickled that the contractor decided to keep the biggest and best trees for the new place. The pin oaks and ponderosa pines are particularly good climbing trees.

If our plans work out, in a couple of years or so a young family with kids of their own will be living in my house, and we'll be blissfully living in a new single story abode and my view from my swing will contain a whole new forest of trees. Wouldn't it be great if those two new families on our old place become friends and their pack of little kids run around and terrorize the neighborhood just like Bev and my kids did twenty years ago?

Sigh. Such good times.

Sunday, May 14, 2017

Mothers Day



Hello all. It's been an intense few months, but I'm back. I've spent a great deal of time in Wisconsin with my mom, who had suffered a series of strokes after the death of my dad. Ever since her first stroke, Mom would repeatedly tell me and my family that she was ready to "go be with your father", and as of May 5th, she finally was able to do just that. I feel privileged to have been with her when she drew her last breath.  

Her funeral was Wednesday, and what a funeral. Two priests con-celebrating the Mass, the church filled to the rafters with family and friends, the altar overflowing with flowers, and an enormous luncheon spread provided by her friends afterwards. Mom certainly would have been touched had she been able to see it all.

So Mothers Day this year is bittersweet for me. I will miss her dearly and feel as though our family has been cheated out of potentially several more years with her; but I also am sincerely happy that she is now where she has longed to be since January of 2016.

Wednesday, March 22, 2017

Hello Again



Yes, it's me; your delinquent blogger.

Thank you to those who have sent me emails letting me know that I haven't fallen completely off their radar. Your good thoughts are enormously appreciated!

I have been spending lots of time in Wisconsin with my mom and siblings lately. Having just spent a month there, I returned back home for much needed hubby time as well as an appointment with Dr. Young Guy for a trochanteric bursa injection bringing blessed relief.

Tomorrow morning I head back to Mom-land. We placed Mom in a nursing home two weeks ago after she deteriorated quickly bringing hallucinations, delusions, panic attacks; all occurring only at night. She pleaded with us to "take me home!" Which proved to be far too much for our live in caregiver to handle. I foolishly thought that I could be helpful in taking every other night giving Isabel some much needed rest, but Mom's house is tiny. When Mom doesn't sleep -- no one sleeps.

It was so hard to feel so helpless in easing Mom's anguish. Poor dear.

Fortunately we were able to place her in respite care at a local hospital while our hospice team noodled though some pharmaceutical and behavioral strategies to help her. After placement in a small nursing home and some med changes, although still remaining very confused, she seems to be more at ease and content.

It appears at this point that we will not be able to bring Mom home again. So my task upon returning tomorrow is to continue to sift through 64 years worth of stuff stored in Mom and Dad's basement and to monitor the care provided to Mom at her nursing home. The current plan, assuming that Mom remains content and safe, is that I will be able to return home a few days before Easter.

As everyone of my age (fast approaching 60) knows, caring for elderly parents is one of everyone's major life tasks. It seems just crazy that I should be one of my family's oldest members!

It's a good thing that John and my siblings are so level headed and intelligent.

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.

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