Friday, August 30, 2019

Because I thought I Needed Something New

To borrow a quote from my friend Terese, GOOD GRIEF IN A BUCKET.

My body and it's antics never cease to amaze. Want to see my latest adventure?


So this is my arm and my IV with antibiotics flowing, and my very red and swollen and painful middle finger.

It all started last Sunday, when I woke up to a strange aching in my finger which progressed with amazing rapidity to an unbelievably painful hot swelling. Which left me phoning my clinic's advice nurse at four AM. Ice and elevation and acetaminophen had caused absolutely no observable improvement. 

Who knew that dinky little joint at the end of my finger could cause such pain?

The next morning found me at the clinic, and after a doctors exam, sitting in the nurse treatment center getting IV Rocephin. An X-ray ruled out a bone infection or joint injury, which meant I had a cellulitis, which is an infection in the soft tissues.

Whew, I thought. This has got to get better soon.

Wrong. It turns out that the Rocephin wasn't effective against whatever beastie had taken up residence in the soft tissues in my finger. Over the next 24 hours, the redness and swelling had progressed down the full length of my finger and had sent out pink tendrils down towards my palm.

It never occurred to me to try to document this with a photo. I was too busy gritting my teeth and trying to ignore the increased pressure and pain.

So, on instructions from my doctor, I dutifully presented myself to an ER nurse; who took one look and exclaimed, "Yuk!"

As a nurse myself, I appreciated this brief but accurate medical diagnosis. I wanted to throw myself and kiss his feet in gratitude when he went on, "Would you like something for pain? Must hurt like heck!"

Another IV and a different IV antibiotic followed. Also an exploratory incision by the doc hoping to find a pocket of pus to drain, but no such luck.

It appears that Clindamycin is successful in the battle against this infection.

Yay for modern medicine! And pain pills!

Although I'm making real progress, I haven't completely healed yet. But I will behave myself and keep up the icing and elevation and antibiotics.

We SHALL conquer. 

My goodness. What's in store for me next?!

Friday, August 9, 2019

Surprises and Chronic Autoimmune Urticaria


Last week, as I was floating in my hammock chair I saw something amazing: a perfect spider web that seemed to be suspended mid air.


So beautiful. How on earth did the spider architect anchor it? The connecting silk lines were almost invisible.

What arachnid artistry.

I snapped pictures of it from all angles.


This photo didn't turn out as well.....kindly disregard the hammock hair. 

What a pleasant surprise. I love those kind of surprises.

Then there's the other kind of surprises. I'm not happy with that kind.

Like this one:


Yeah. That's my old lady knee. Notice the strange red rash? Before I slathered hydrocortisone cream on it and took an antihistamine, it was in full-blown puffy hives mode. There were lots of them. On both legs. Accompanied by a vicious itch.

Not fun.

So these hive beauties have been showing up every night for the last few weeks; only to disappear promptly by 9:00 AM. And for the life of me, I just can't figure out why. I have changed nothing in my night time routine. I've used the same unscented laundry detergent for years, my jammies are literally decades old, and the sheets on our bed have been around forever. I use the same body wash, sunscreen, and moisturizers for what seems like forever.

My environment has been the same for a whole year, and I've been eating the same foods too.

So what's causing this very unwelcome and extremely strange change in my skin?

I have no idea.

The only thing that HAS changed is the absence of immune suppressing drugs in my body for the last six weeks. 

Is this related? Could hives be caused by an increase in autoimmune activity? I wondered.

After a bit of Google Scholar reading, the short answer is possibly yes. The long answers can be found here. Here's an excerpt:
Chronic urticaria is hypothesized to occur because of a predilection in the patient to develop reactions to self. Supporting this hypothesis, a strong association has been found between chronic urticaria and additional autoimmune diseases, such as thyroid disease, rheumatoid arthritis, systemic lupus erythematosus, Sj√∂gren’s syndrome, celiac disease and type 1 diabetes, among others. (Bolding mine) Continue reading here
It appears that Sjogren's syndrome can possibly cause hives like mine, also known as chronic autoimmune urticaria. Dr. Young Guy and I will be discussing this soon to try to determine the cause of my particular brand of hives.

Good grief. Is there any part of my body that ISN'T affected by autoimmune disease? 

Have you experienced chronic autoimmune urticaria?

Friday, July 26, 2019

The sun is not my friend. So let the shopping commence.

Dang. They're back.

My spots. Or, more accurately, the lesions from my Subacute Cutaneous Lupus Erythematosis.

After most of my neutrophils went missing last month, Dr. Young Guy discontinued my immunosuppressant meds and we adopted a wait-and-see king of strategy moving forward.

We're waiting to see if  a couple of things happen: first and most importantly, we're watching to see if my neutrophils or any of my other blood counts drop again. This would indicate that something more than a drug side effect was to blame.

Secondly, we're waiting to see what this old autoimmune body does in response to the absence of these medications. And, after five weeks, BICJ and I are annoyed. Actually we're downright crabby. Because a few things are making their unwelcome reappearance.

I definitely am beginning to feel the dreaded malaise creeping back -- that feeling as though I'm teetering on the edge of getting an infection. You know how that feels? As though you're running a temp (even though you're not) and my body aches everywhere. Ah, I remember this feeling well. I've experienced it ever since my first flare of disease activity back in 2003.

And, my rash is slowly making its appearance again. I'm spotty and dotty on my face, my shoulders, chest, back, and legs. There's far fewer lesions than I've had before, but they are definitely there and it seems that they are inviting their friends. Grr.

Dr. Young Guy has advised me to take my sun protection very, very seriously since exposure to UV light found in sunshine seems to raise autoimmune disease activity significantly. And, though I always have been careful, lately I've added a few extra tools in my arsenal in sun protection.

So I slather high SPF sunscreen everywhere first thing in the morning, and reapply it later in the day on my face and arms. After which I put on sun protective clothing.

Did YOU know that a regular cotton t-shirt, even if it is long sleeved, does not provide excellent UV protection? I didn't. But now I do after reading this, found here

A typical white t-shirt has a sun protection factor around 7, and this drops to about 3 when it is wet. - Carolyn Vachani RN, MSN, AOCN

My goodness. This informational nugget led me to the one and only pleasurable facet found in this whole experience: shopping. Yes. Because of my disease (insert poor me dramatic gesture here) I have been forced, yes FORCED, to increase my wardrobe considerably in the interests of keeping my autoimmune activity at bay.

Sigh. One does what one must.

I've discovered something very interesting about myself as I've acquainted myself with the various brands that specialize in sun protection: I love to dress like a golfer. I think long sleeved, lightweight, colorful golf polos are amazing. AND there's a tennis player lurking inside me as well. Wearing a crisp white stretchy top. With pants that bend and stretch where I do and a pair of comfy shoes.

Who knew?

Not me. Especially since I neither like or excel in either sport. Well.....I do have to concede that driving around a green manicured golf course in one of their carts is a lot of fun. And one has to appreciate a sport in which a drinks concession cart toodles its way around too. Nice. I think it would especially enjoyable if one was sporting a snappy high SPF golfing outfit and sipping an adult beverage.

Just don't put a tennis racket or a golf club in my hands, for heaven's sake.

So here are a few of my favorite finds so far.

Marcus loves sitting in the shade with his grandma. I love his little orange hat. 


I love love love the shirts made by Coolibar.

I wish these came with a guarantee that once I slipped it on I'd look like this gal.

I got mine on Amazon; I don't get any revenue should you choose one of these beauties BTW.

I've also discovered UV Skinz, and San Soleil. Both manufacture wonderful UPF 50+ clothing. But they're pricey. I sprung for full price for my first shirt then wore it continuously until I found more on sale.

Do you have a favorite brand of sun protection clothing?

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.

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