Wednesday, March 22, 2017
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
.........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?!
Wednesday, January 25, 2017
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:
Wednesday, January 18, 2017
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.
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
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
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.
Friday, December 16, 2016
Friday, December 9, 2016
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?
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
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
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.
Tuesday, November 22, 2016
Getting ready for Thanksgiving? Yes?
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.
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: