Saturday, May 11, 2019

We Did it All

Frodeo is such a patient doggie.

Yeahhhh. I am happy to report that the Easter Ham-O-Rama was once again an unqualified success. The hams were smoked and voting took place on the two glazes, (the original whole mustard and honey won as usual)

the Easter eggs were hid and hunted:

 and yes! The Peeps were flung! But dang, the slingshot broke. Again. I shall resume my flinger quest.

Here John demonstrates technique and dictates contest rules in his official Peep flinging judge vest. 

After the guests and kids went home and John and I recuperated with happy contented sighs, we returned to our landscaping mission, namely ripping out dead and overgrown trees and shrubbery and tossing them in our burn pit. John of course does the lion's share of work. Here's my contribution to the effort. Daisy and I make such a great working couple. 

Like my cool chicken garden shoes?

Erm. I may possibly have a plastic wine glass containing a very small amount of a very nice Pinot Grigio in my hand, but not to worry. It was my one and only wine/Daisy experience and of course John was ready with his camera, the stinker. Bonus: I didn't drive myself over the cliff.

Sunday, April 14, 2019

The Peeps Simply Must Be Flung

Want to buy Peeps in bulk? Get 'em here. 

In a little less than a week, that awesome springtime holiday arrives that's one of my all time favorites: Easter.

And y'all know what THAT means, don't you?

Yes. It's time for the HAM-O-RAMA! And the annual tastiest ham glaze voting! More on that after the big dinner actually occurs. I shall report on the results next week.

But best of all? The after Easter dinner activity that we all do underthethreatofnodesserts happily to burn off some of that ham before we head for the sweets.

We do PEEP FLINGING. Oh, man. What fun. It has been one of my most favorite holiday games EVAR. It usually goes like this: players put a peep into a slingshot, and fling that sticky confection as far as they can. After everyone has a turn, Greg and John (complete with dayglow officiating vests) measure  carefully and deliberate thoroughly; after which they declare a winner. Who receives an impressive and highly coveted Dollar Tree trophy.

Yes. This sugar covered event is conducted outdoors. My lawn looks amazing with all those pastel chicks flung everywhere.

So our previous toy slingshot peep flingers finally broke, which meant that I was on a quest to replace them. I searched in vain for the same ones with no results, so instead I ordered up a couple of basic slingshots and presented them to the usual suspects -- Terese, Greg, and John -- during one of our weekly Friday night dinners. The guys took one look at the new weapons and seemed skeptical.

"Jul. These are meant for adults.....I don't think it would be such a good idea to arm several little boys with these high power slingshots. Things could get ugly real fast."

Dang. I didn't think about that. I just wanted some that wouldn't break any time soon.

Oh, c'mon. We'll supervise them really really carefully. Can't we put them through one of our research and development sessions? LET'S JUST TRY IT. Puhleeeze? 

The guys agreed with doubt and reluctance. So we trooped out to the front porch and I watched as John and Greg took turns loading up the slingshots. John let the first one fly with less than ideal results after the force of the shot ripped the yellow confection into pieces, leaving the pouch of the slingshot sticky with marshmallow and the other half of the candy blobbed onto my maple tree. It seemed that no matter what modifications we could make to the placement of the Peep into the weapon or in changes to technique, that Peep just wouldn't fly. We came up with some alternative ammunition: bunnies with parachutes, and squishy toy Easter eggs, but the game simply wasn't the same.

Sob. Bummer. So disappointing. I really, really want to have our Peep contest. I got my grandson a t-shirt that says Hanging With My Peeps and everything.

I found it on Amazon, of course. 

I'm on a quest to find a Peep friendly slingshot, or some other flinging device. Ideas, anyone? This thing HAS to happen.

Friday, March 29, 2019

Chronic Trochanteric Bursitis and Me

Guys. For at least the last ten years, I've been had a real pain in the keester.


Have I whined about my chronic trochanteric bursitis lately? No? Well. Pour yourselves a big cup of coffee and pull up a chair. I could use a few shoulders to whine on. I promise to reciprocate whenever you need someone, ok?

So. My keester. Or, more accurately, my bursae over the outer bump of my femur bone near the hip. It looks like this:

Well. A synovial bursa (plural bursae or bursas) is a small fluid-filled sac lined by synovial membrane with an inner capillary layer of viscous synovial fluid (similar in consistency to that of a raw egg white). It provides a cushion between bones and tendons and/or muscles around a joint. This helps to reduce friction between the bones and allows free movement. Bursae are found around most major joints of the body.

So my superficial trochanteric bursa over both hips have been chronically inflamed -- called trochanteric bursitis -- for a very long time. For most people, the inflammation can be conquered by the use of ice, rest, strengthening one's core muscles, and a one-time injection of steroids into the bursa. But, of course, my bursae are remarkably stubborn. Irritable. Problematic. And none of those interventions provided long term solutions.

They're acting kind of like BICJ. Hmmmm. Makes me wonder if she's responsible for this.....

Anyway, for the last decade or so, the only thing that calms my cranky little sacks is regular steroid injections. I get them every three months or so like clockwork and they provide awesome relief.

Except, the last two sets of injections didn't. As a matter of fact, before my most recent injections, I had to resort to using a cane to support my left hip and leg. Which made me just as cranky as my bursae. So I made an appointment with Dr. Young Guy to discuss the situation.

"Why why why why WHY?! I have done everything that I am supposed to do to make this better! I exercise, I have lost weight, and I ice pack the heck out of my darned hips."

He smiled and sighed. "I know. But, you know that Sjogren's is a connective tissue type disease, and I guess this is probably what's happening."

"So am I stuck with this cane for good?"

"Not necessarily. Having your bursa removed might give you a lot of relief."

"You can function without your bursae?"

"Yup. It isn't recommended unless the injections aren't working anymore, and I think you are just about at that point. We'd need to get an MRI first, then I would refer you to a surgeon. What do you think?"

I looked at my cane, rubbed my painful hip, and nodded. "Let's go for it."

So it appears that the possibility of surgery may be ahead of me. I haven't had my MRI yet, so the referral has not been made for the surgery, but it's in the works. I'll keep y'all posted. You can read more about a trochanteric bursectomy here. 

Wednesday, March 27, 2019

A Green and Growing Reason to Move

Like the reflection in the window selfie? This was taken back when my garden gloves were actually clean. Not any more. 

As I am certain y'all know having wah-wah-wah-ed about it frequently, I dislike exercise. Well, to clarify,  I dislike exercising just to exercise. Like climbing on a treadmill and setting a timer then plodding along. But I DO like feeling my body in motion with a purpose. The challenge has always been for me to find those ways to get exercise while doing something that is enjoyable and productive.

I realized when we moved to our new house that I had five and a half acres worth of enjoyable tasks ahead of me, woot! I love being outdoors futzing around with the yard and plants and garden; and this place will provide an endless supply of these kinds of projects. Which definitely will keep this old body in motion.

The previous owners of our house were not physically able to maintain the property for the last several years, and as a result everything was overgrown and crowded. While I love the cottage-in-the-woods effect, around here having this much vegetation so close to the house would be an enormous risk should the unthinkable happen -- a forest wildfire. The house would be in flames in seconds. So we have been working on pruning and thinning and removing whenever John has the time and I have the energy. I love grabbing my pruners, pulling on my leather garden gloves and heading outdoors with Lulu on my heels.

See how crowded those plants are? I could literally hear them begging for light. "Help meeee....." There was a cedar tree with branches growing ON THE ROOF.

And check out this rock garden. There's enormous potential there for an amazing terraced landscape but lots of work ahead.

Then there's John's avowed enemy: the evil wild blackberries. These vines are a non-native extremely invasive plant that seems to be able to thrive anywhere with its thick ropelike vines and enormous sharp thorns. They almost completely surround our property. Ah, but they are no match for John.

So after several months and countless trailer loads of yard debris, we are getting closer to the point at which I can think about redesigning the landscaping around the house. What fun. I can't wait until we are closer to spring and I can begin making the rounds of my favorite plant and tree nurseries. I'm thinking a star magnolia is first on the list, and then lilacs. And who knows what else? But these babies will be planted an appropriate distance from the house and given lots of room to spread.

Star Magnolia found on Wikipedia 

See? Lots of room to plant now.

Yeah, that poor rhododendron in the foreground looks really sad, but I'm going to give it one spring and summer to see if does better now that it has room. I love rhodies.

What keeps your body moving?

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.