Tuesday, July 16, 2019

It's a Mount Norway Miracle

Even though I am happy as the proverbial clam up here on my mountain, still I miss a few things about our old house.

For one, having my buddy Susan living across the street. I have tried to persuade her to move out this way, but she has the nerve to sincerely enjoy being a city girl. Go figure.

I also have been missing my glorious huge bathtub in that place. It was indulgently enormous -- big enough that I could put enough water in it to float. Sort of.

When we bought our new house I was thrilled that it too had a ginormous bathtub. And this one was a Jacuzzi with powerful jets.

How cool would that be when I'm aching all over, I thought.

l fired that thing up as soon as we had moved in and I wanted a bath.

AAAAAACCCCCCCCKKKKK!

Black strings and chunks began spewing from the jets.

Apparently the previous owners had never cleaned this thing. Disgusting.

What followed was a whole year of buying spa/hot tub/jetted bathtub products followed by endless hope that the result would be a tub filled with sparkling clear water.

It was an expensive and exhausting adventure. I am glad that we have our own well. I don't think we could have afforded the city water bill had we been in our old house.

Ah, but persistence paid off when this happened:



I couldn't believe my eyes. I rubbed them and looked again.

Wahoo!


Life is good; especially in my clean bathtub.

Sunday, July 14, 2019

Well.

Lots of folks have asked me what I've been up to over the summer; and since pictures are far better than lots and lots of words, here y'all go. But you know me: I still have to blab some. Just a little.


What I looked like going in to the clinic for lab draws during my neutropenia house arrest.

So my whites are back into normal range, and I am a free bird once again! This makes me very happy. Dr. Young Guy and I are embarking on a grand experiment to get more information that will give us a clue as to the cause of my neutrophil drop: I am not currently taking any immunosuppressants. We assumed the drop was drug related, but if I drop out again, this time without these meds on board, I will need a work up with a hematologist to evaluate further. We'll see how long this absence of treatment can go before all of my Sjogren's Syndrome symptoms rear their ugly heads.

My arch enemy. 
After all of my protective restrictions were lifted, I could resume my quest to eliminate these nasty Canadian thistles from every inch of our property. Just when I'm certain that I've conquered them, I find more. But I will persist and WIN this battle. So there.

We are starting to see some rewards for all of our outdoor efforts.






Back in June, we had some real excitement around here when a swarm of honey bees decided to land in one of our Douglas fir trees. I called our local honey bee club (who knew we even had one?) and a member brought out an empty hive in the hopes that they would move in. After a couple of days of buzzing and hanging around the tree about thirty feet up, they DID. Amazing. When it got dark, that night John and I wrapped the hive in a tarp, PUT IT IN OUR SUV AND DROVE IT 45 MILES TO ITS NEW HOME.


I still can't believe we were brave enough to do that.



Here they are climbing up into their new home. Crazy cool. 

Yes. John drove, and I sat in the back seat with the bees. Didn't see one escape the hive during the whole trip. All those little buzzers were sleeping for the night.






We also discovered this footage from our game camera in June. More than once, so we're guessing this guy lives in our back yard. I've named him Yogi. I think his ears are so furry and cute.



Most importantly, this cutie pie has learned to walk.




Tell Gramma EVERYTHING.

What fun. Sigh. It's good to look back at all the good times that far outweigh the less than good ones.

So. What have y'all been up to?

Tuesday, July 9, 2019

Sjogren's Advocate: Newly Diagnosed

Sarah Schafer, MD and Sjogren's patient

I can't begin to express my admiration and appreciation of Dr. Sarah Schafer for so many things, but most recently, the creation of her website: Sjogren's Advocate.

If you haven't had a chance to read it, pour yourself a cup of coffee, boot up the laptop, and settle in for a thorough education in current Sjogren's Syndrome diagnosis and treatment.

All of the entries to her site are excellent, but one page in particular deserves particular attention: For the Newly Diagnosed. I have included a few excerpts here but please visit this page to read the discussion in full.

Because Sjogren’s is a complex disease, it requires a team of knowledgeable clinicians to provide optimal care. Creating a core health care team is an important priority for new patients.  While currently there is no cure, a lot can be done to alleviate symptoms and prevent complications. 
Newly diagnosed Sjogren’s patients face special challenges. The stress of a chronic disease diagnosis is often made worse when patients discover that many clinicians remain largely unfamiliar with Sjogren’s.   There are numerous stories of patients who have had their symptoms downplayed, ignored or psychologized, both before and after diagnosis.  Sadly, it is also common for patients to hear conflicting or incorrect information from their clinicians. A separate section will be created to provide strategies for countering common misperceptions.  
Despite the fact that it is common, serious and multisystemic, little attention is given to Sjogren’s by medical training programs. This means that patients often need to educate themselves-and their clinicians- in order to advocate for comprehensive, up-to-date care. This may seem a bit backwards, and it is!  Still, it is a worthwhile investment to try to find providers who are engaged and/or willing to learn about Sjogren’s. 
........ 
Priorities for the newly diagnosed 
1. Learn these Sjogren’s basics 
Sjogren’s is a complex systemic disease. It is much more than dryness.
Sjogren’s patients should be treated by a team of knowledgeable clinicians.
Sjogren’s can be hard to diagnose: clinicians sometimes disagree on the diagnosis.The diagnosis section can help patients deal with this conundrum.
"Early diagnosis and high-quality professional care are extremely important for Sjogren's patients. Currently, there is no cure for Sjogren's. However, treatments may improve various symptoms and prevent complications."
The Sjogren’s Foundation: https://www.sjogrens.org/home/about-sjogrens/treatments 
2.Understand the main goals for treatment 
Improve quality of life, usually by treatment of systemic, eye, and oral manifestations.
Prevent disease progression of both systemic and sicca features.
Screen and monitor for direct complications of Sjogren’s. Prevent when possible and treat as indicated. 
Screen and monitor for comorbidities. Prevent when possible, and treat as indicated.
Some clinical issues are important to address early on. Others can be addressed over time, depending on each person’s unique needs. To learn about the major areas of clinical concern, see Sjogren’s- Another look. 
3. Gather a core health care team 
At a minimum, this includes a primary care provider (PCP), a rheumatologist, a dentist, an ophthalmologist, and for women, a gynecologist. Most Sjogren’s patients see at least a few additional specialists. Sometimes a specialist is the first person to suspect - or diagnose - Sjogren’s. 
Choosing a PCP and a rheumatologist that are a good fit is usually at the top of the priority list. However, specific symptoms or complications may place other providers at the top of the list.  
 “Rheumatologists have the primary responsibility for managing Sjogren’s and usually are the lead of your ‘medical team.’ “   ~  May 2019 Moisture Seekers Newsletter.
Continue reading here

Bookmark the Sjogren's Advocate site and visit regularly. You can also sign up for regular site updates. The information to be found there is invaluable for new AND seasoned autoimmune disease patients.

Thursday, July 4, 2019

All Fixed

My apologies to everyone who attempted to view Reasonably Well and were unable to access it recently due to technical — AKA not my fault — difficulties. After a lengthy session with the Google help department’s extremely patient personnel, problems resolved.

Mischief managed.

See y’all soon.

Wednesday, June 19, 2019

Stuff

I was talking to Terese today. We were comparing notes about each other’s various aches and pains. She has recently had a joint replacement, and while anyone who has had this procedure knows that there is a fair amount of pain involved, still she is doing great. What a trooper.

Me? Well. I haven’t posted much lately because, as I told Terese, “I have been cranky forever. No one wants to read that stuff.”

She replied that she disagreed. “Other people have the same attitude as you do. I think people hearing about crummy times as well as the good.”

Actually, I cleaned up this version of my language in that dialogue. But you get the idea.

So here I am. And it has been a crummy month for me.

I have posted before about my decade long battle with bilateral trochanteric bursitis. And the fact that the injections into the bursae have not been working as well and for as long as previously. So I recently had a MRI and x-rays to get to the bottom of the issue. And the results surprised me. Turns out that in addition to my inflamed bursae, I also have tears in my gluteus medius tendons on both hips. So I dutifully attended my appointments with Dr. Young Guy, and then finally, today, an orthopedic physician that specializes in hip disorders. I presented myself to him today fully expecting one of those don’t worry we’ll have you fixed up in a jiffy kind of discussions. Instead, I got a serious but empathetic this may be a tricky one conversation.

Grrr.

He told me that after he completed his own evaluation of my imaging studies, he felt that the underlying problem was actually in the hip joint itself. Oh, yes, I did indeed have tendon tears, (which would stabilize over time) and bursitis (but I was not a good candidate for a bursectomy and that even if I had the surgery, the pain issue would not be resolved that way). This was not what I wanted to hear. I wanted a date that I could write in my calendar on which I could have a quick scope procedure and  a speedy recovery and then move on with things. Pain free.

While sympathetic to my attitude, he told me that this was not in the cards for me. Instead, he envisioned a different therapeutic and diagnostic procedure: an injection into my hip joint instead of bursae. If I received significant relief from my symptoms, then we needed to have a conversation about a hip replacement.

Wah, wah wah.

To complicate my disappointing morning, I was also dealing with a very surprising and critically low white blood cell count. Last week, I felt really and truly crummy. My fatigue was crushing, I was nauseous, and had what Terese describes as “Mount Vesuvius” type diarrhea. I had no idea what was going on, so when I developed strange abdominal pain as well, I went in to the clinic for evaluation. The doc ordered a raft of lab work, which I had completed immediately. While I was driving home, I received a call from our clinic pathologist. He informed me that my whites were extremely low and that I should not go home, but instead over to the hospital emergency room. And so I did.

This is an extremely lengthy poor Julia story isn’t it? Blame Terese. She told me to share EVERYTHING.

So. Here I am back home. It’s several days since my ER visit, and a follow up CBC today showed no change in my whites -- specifically my absolute neutrophil count.  Also disappointing.

BICJ and I are tantruming together for a change. Usually I try to talk her off the ledge in moments like these, but today, I find myself joining her in her hysterics.

We’ll both get over it, I know.

I'll keep y'all posted.

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.

Yeah.

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.

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