Friday, October 18, 2019

Lessons Learned

It's been 16 years since my diagnosis.

Wow.

Seems like it happened yesterday, but at the same time, I feel as though it's been a major part of  my whole life as well. Y'all know what I mean. I feel as though I have no surprises left for me in this old autoimmune disease riddled body, and yet......I feel strangely as though I understand absolutely nothing about Sjogren's syndrome.

On days that I feel optimistic, when this paradox occurs to me, I simply throw up my hands and laugh. And think something along the lines of  Ah well, it is stuff like this that keeps life interesting.

Then on days like today when I'm struggling with chronic decade-long issues, I throw up my hands and think something far less cheery. You can insert your own feelings here since I know that y'all deal with the same things.

It is on days like today that I can appreciate the value of those sixteen years behind me in managing this illness. Today, my energy is low, my joints are painful, and I'm teetering on the edge of a POOR ME episode. Disgusting.

But based on my experiences over the last sixteen years, today I am able to step back from the abyss of self pity because I have been here before. Which is both unfortunate as well as a good thing. I've had more days like today than I care to count, but I have also had innumerable episodes during which I have realized that these experiences don't last forever. That I can come out on the other side of gloom, doom, and discomfort and survive. To not only survive, but to thrive in my own way.

One doesn't come by those types of realizations without years of experiencing these rather crummy situations. Makes me wish that current me could have made a time travel visit to newly diagnosed me brimming with tips tricks and encouragement.

BUT.....

Newly diagnosed me would probably have looked at current me with skepticism and disbelief. I would have loftily informed current me that I was not going to let this disease limit any aspect of my life and that surely in 16 long years science would cure autoimmune disease, for cryin' out loud.

Yeah. Bratty Inner Child Julia has been around since I was born, I suspect.

So I suppose it's actually been necessary for me to slog through all these years; to experience it all.

Bah.

But here I am. And it's going to be OK. I mean, if I didn't have a disease that occasionally anchors my butt to my recliner I sincerely doubt that THIS EPIC EVENT COULD HAVE HAPPENED:


Did you KNOW THAT OCTOBER IS GODZILLA MONTH  on the Turner Classic Movies channel? 


Which forced -- yes, forced -- me to drag Terese and Greg and John to our living room last Friday to celebrate. Because Godzilla is awesome. And because they knew I just didn't have the energy to go out carousing that night.

And also forced John and Greg to wear GODZILLA hats while sitting through not one but TWO Godzilla goodness-filled movies.


I mean, I can thank Sjogren's for that fun filled evening.

Lesson learned.

Friday, September 27, 2019

Snapshots

Thanks to everyone that asked how life has been treating me this month. I'm happy to report that although a few issues remain -- and actually always will -- I'm doing fine. Just ducky, in fact.

I'll update y'all by the easiest method I know: pictures.


Marcasaurus, my amazing grandchild, continues to develop skills at lightning speed. Here he demonstrates his toe-chewing expertise. Wouldn't it be great to be as limber as this??


He also has shown an acute interest in climbing. Anything. And everything. So in the interest of providing a safe climbing toy, we bought this way cool baby play structure. IT HAS A PERISCOPE.


I've been on a quest for fall type decor for our new house. Unable to find exactly what I've been imagining for a front door wreath, I Frankenstein-ed together several items found at various stores and plunked it on the door. I love it. I hope it holds up so that I can use it again next year.


While in a crafty mode, I decided to keep it going by creating a minimalist twig shelter for my Saint Francis. I think he'd approve since he preferred to live outdoors. No warm cozy house for the saint in real life; and this certainly is not. I talked John into dusting off his boy scout skills and lashing together the twigs for me.


Oh, hey. This was exciting. We've been piling and piling stuff on the burn pit all summer, but because of the burn ban that's been imposed in our county, we haven't been able to get rid of all those blackberry vines and weed trees and dead branches. But the ban has been lifted so John and I pulled up some lawn chairs, dragged a garden hose out there in case of emergency, and lit the thing. I was expecting this big POOF of flame, but ah well....all we got was a slow and steady burn. Which, I guess is the best way to do it. We don't need a forest fire.

I did have one really traumatic episode, though. Brace yourself. It's brutal. AND IT HAPPENED MORE THAN ONCE.


So. All of these white plastic tubes are in my top vanity drawer; and I use all of them every day, just in very different places. If you catch my drift.

Only one is toothpaste.

Yeah. So in the morning, when I'm all dopey and still half asleep and I blindly thrust my hand into that drawer, I have a one in four chance that I'll grab the toothpaste; and without examining further, blob the contents onto my toothbrush and stick the whole thing into my mouth.

I just want to say here that Kenalog steroid skin cream tastes awful. As does athlete's foot lotion, and Metrogel topical rosacea gel.

You can take my word for it since I now have first hand knowledge. I think I'm going to take a marker and scribble something on the back of all these tube clones.


I wish I could share a picture of my newest friends here. I haven't been able to snap one yet, but hopefully soon. We have a pair of ravens that live in one of our trees. I've named them Ramon and Ramona. They're fascinating! Ramon has a deep croak, and I can tell the difference between his and Ramona's voice -- hers is slightly higher and she doesn't seem to be able to make as many different sounds. Ramon can croak and caw, but he also makes these really bizarre noises too. One sounds just like water dripping into a bucket. Another is some kind of electronic noise. I've been reading about how intelligent ravens are. I hope they figure out how much I like them. I keep trying to imitate their croak. I'll bet they just crack up when they hear my pathetic sounds.

Wonder what a raven laughing sounds like.

I decided to decorate my mantle with ravens for this Halloween. In honor of Ramon and Ramona.

Anyway, that's how things are going here. How are you?

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.

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