Tuesday, February 26, 2019

Medication Safety

Those blue eyes! Those smoochable cheeks!

My grandbaby, Marcus the Marcusaurus, has just acquired an exciting skill -- this kid is mobile! He's crawling and pulling himself up to stand, so walking won't be long in coming.

How exciting! Grandma and Grandpa are thrilled. Mom and Dad are exhausted.

I predict that these two will keep their family on their toes. 

So after I heard the news and squealed joyfully over the videos, I started looking around my house with a new perspective. Suddenly I saw grandbaby danger around every corner. So we bought the outlet covers, and are ordering kitchen cabinet locks, and a couple of heavy duty baby gates. When I stood in our bedroom scanning it for safety issues, I realized that my medication basket perched on my bedside table would be a huge hazard.

Everyone knows that any medications, including over the counter meds and vitamins, can poison and potentially kill children. But my bedside basket contains an especially lethal bunch of bottles.

I keep my meds plus a big old water bottle at my bedside since I take all my meds in the morning and at night. But no more -- this is a baby accident just waiting to happen.

Can you imagine what would happen to a child if he/she ingested potent immunosuppressants? Or any of my neuropathy meds? And to make matters even worse, I use caps for the bottles that are not childproof due to my arthritic hands.

But really, is there any childproof cap that IS actually childproof? I'll never forget the sight of daughter #1 uncapping a bottle of toxic furniture polish that was supposedly in a childproof package. She had that thing open and dumped upside down in a flash. I'm thinking that simply replacing the bottle caps wouldn't keep my medicine safe from any child with our family's genetics.

It was obvious that all this potentially dangerous stuff needed to be rounded up ASAP. It is going to be stashed in a closet armed with a lock. But my prescription meds make me extra uneasy, so I bought a lock box that will hold these especially dangerous drugs.

Where do you keep your medications?

If anyone has suggestions for grandchildproofing in general share them in the comments below. Given the mischievous proclivities of our children, I have a feeling that our grandchildren will be equally............problematic. Smile.

We'll need all the help we can get.

Friday, February 22, 2019

Just doing what I have to do

Life with autoimmune disease is so weird. But y'all know that.

Want to hear all about my particular and most recent brand of weirdness? I'll make you a deal -- you listen to mine and I want to hear all about yours. OK?

I appreciate your very sympathetic ears and eyes enormously. Yesterday I was reminded yet again how difficult it is to help friends and loved ones understand what living with autoimmune disease can be like when my hair stylist asked, "So you look good. You must be all over that autoimmune stuff, right?"

I really, really appreciate being able to connect with others who understand what it feels like to be asked a question like that.

In fact, this week and whole month in general have been kind of crummy. For various reasons, but mostly because I seem to be stuck in an energy black hole yet again. I knew better than to go into great detail telling her she was wrong, but I did tell my stylist that I've been pretty tired; to which she replied how exhausted she was because she and her family had gone clamming out at the coast, had a full day of clients ahead of her, then was planning on shucking and freezing all those yummy razor clams that were harvested.

I agreed with her. That would tire anyone out, I said. I put on my best sympathetic face but inwardly I was turning green with envy. Dang. What I wouldn't give to have the energy to work full time and take trips out to the beach clamming.

She finished up with my haircut, we said goodbye and I slogged on home. And promptly put myself to bed.

This whole autoimmune fatigue thing is by far the most frustrating and difficult part of my disease. Do y'all feel that way too? I've said repeatedly that dealing with the dryness, the neuropathy, the joint pain, the skin hysterics, and everything else is a piece of cake compared to the fastigue. The totally unpredictable, bone crunching, and inexplicable fatigue that rules each and every day.

As I type this, I am completely wiped out. I feel as though forming comprehensible sentences through my wooly and thick brain fog requires a ridiculous amount of focus. The skin on my face and nose is doing that very bizarre thing in response to lack of energy: the skin feels ice cold. I'm wondering if I'll be able to scrounge up enough energy to have dinner out with friends this evening. (It's not looking good, by the way...) I'm doing my best not to scratch myself silly over this rash that's been plaguing me since November, and I'm trying to ignore the neuropathy symptoms in my feet and legs. I can't have my hip bursae injected for another two weeks which means walking for any length of time causes my hips to hurt like heck and makes sleeping on my side impossible. And then over the last month my blood sugars tend to take a dive -- who knows why? -- more times than I like. I could wah wah wah more but won't inflict that on y'all today.

My point, other than indulging myself in one big whine session, is a discussion about limitations and acceptance. And about my frustration with myself. I have been dealing with this stuff for seventeen, yes, SEVENTEEN years. When I started working through all the phases of grief after realizing the implications of my diagnosis, I fully expected that I would eventually have my compensation act together. Eventually meaning within oh, four or five years.

So needless to say, that didn't happen.

Which is not to say that I haven't learned a few things along the way. I have. For example: I have learned to step back from my anger as best I can, and try my best to see any positives in the moment that I am experiencing. So I'm doing my best to appreciate that it looks like a snowglobe outside of my living room window right now, the fireplace is making this room snug and cozy, and I have a snuggly schnauzer napping in front of said fire. Just acknowledging these things and writing them down makes me feel a bit better.

A bit.

Humor goes a long way in dragging me out of my pity parties, too. Things like this, which incidentally, probably only a chronically ill person would find funny. But I think it's hilarious. 
Found here:

Is that not perfect? Oh my goodness.

Thanks for the listen. Tell me what's going on with you. What helps you get through this struggle?

Sunday, February 10, 2019

Snowpocalypse 2019

Whew. Our first winter here on the mountain has been memorable. We've received over a foot of snow with the possibility of more in the upcoming week. I'm getting a serious case of cabin fever but even so, the snow is so beautiful.

Saturday, January 26, 2019

A New Buddy

Look who fluttered into my backyard the other day.

This gorgeous boy landed on the tallest tree in our yard one morning as I was sipping my first cup pf coffee.

He surveyed the area (Golly. Wouldn't it have been amazing to see what he was seeing?) totally unafraid for at least an hour before swooping off after he sighted prey.

He was airborne and down the mountain in a split second.

While he was perched on the towering Douglas Fir tree, he and I had a one sided conversation. He seemed totally unimpressed as I stood on my deck and talked to him.

"Well, hey there. I'm Julia. What's your name?"

He looked at me with a steady gaze.

"OK. Strong and silent type, I get the picture, big guy. I think you look like an..........Ed. No, Eddy. That's it. I will call you Eddy. Is that all right with you?"

He didn't fly off in a huff, so I guessed that the name Eddy met with his approval.

"Whatcha out hunting for this morning, Eddie?"

He continued his surveillance in silence.

"So. Eddie. Not to be unfriendly or anything, but given the fact that eagles like small furry animals for breakfast, I just want to make one thing clear: I'm totally cool with you hanging out in my tree (I know, I know -- you think that it's actually YOUR tree, so let's not quibble here) BUT in my yard, Schnauzers are Off. The. Menu. Got it?"

He continued his silent gaze, which I took to be an acceptance of my terms. What a good eagle.

I think we are going to be great friends, I just know it. I wonder if his nest is around here? And if there is a Mrs. Eddy or baby Eddys?

The neighbors have informed me that last year, a bobcat used to sun himself on a big rock in my backyard. We may have to have the same schnauzer-ground-rules conversation if Bob the bobcat show his furry self any time soon. Exciting.

Monday, January 21, 2019

Say WHAT? -- Sjogren's Syndrome and Hearing

Image found on Wikimedia, here.

A reader recently sent me an email asking if Sjogren's Syndrome can contribute to hearing problems. I told her that my short answer was "yup"; then told her that I would provide a more complete answer in an upcoming post. And, as promised, here it is.

Although I knew that autoimmune diseases can impact hearing, I was surprised to learn how prevalent this problem is for those of us who have reluctantly joined the Sjogren's Syndrome club.

Here are links and excerpts from two well written articles. The first is from the Vestibular Disorders Association or VeDA, found here:
What is autoimmunity? How is it connected to vestibular disorders? 
Parts of the immune system, working constantly and behind the scenes, patrol the body in search of foreign invaders and relentlessly attack them once found. On rare occasions, in some people the immune system runs amok, identifies the body itself as foreign, and launches a lethal attack. This self-attack is referred to as an autoimmune reaction. 
The immune system can attack just the ear, attack the ear and some other body part like the eye, or attack the entire body (including the ear). An autoimmune reaction also creates debris. Even if the ear is not being directly attacked, it can end up with debris transported from distant locations and deposited by the circulation. This debris in the ear can cause problems. 
Some autoimmune disorders that can affect the ear include Cogan’s syndrome, relapsing polychondritis, polyarteritis nodosa, Wegener’s granulomatosis, systemic lupus erythematosus, ulcerative colitis, Sjogren’s syndrome, and rheumatoid arthritis. (Bolding mine - Julia) Continue reading here
This was found on Sjogren's Syndrome News, found here.
Sjögren Syndrome Patients Show Early Signs of Hearing Loss, Study Finds
by Patricia Inacio, PhD
Women with Sjögren syndrome show particularly high levels of hearing loss and language recognition impairments compared to healthy women or those with rheumatoid arthritis (RA), study reports. 
The research, “Early hearing loss detection in rheumatoid arthritis and primary Sjögren syndrome using extended high frequency audiometry,” was published in the journal Clinical Rheumatology. 
Hearing loss is a common feature in patients with autoimmune diseases. It is hypothesized that the condition is caused by autoantibodies that damage the inner ear, but the exact mechanisms are not fully known. 
In an attempt to understand the audiological behavior of patients with rheumatoid arthritis and primary Sjögren syndrome with those of healthy subjects, researchers recruited patients from the Center of Specialties in Arthritis and Rheumatology at the University Hospital Dr. José Eleuterio González in Monterrey, Mexico, between August 2014 and August 2016. Continue reading here
Do you experience hearing loss as part of your autoimmune disease manifestations?

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.


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.